Pulmonary Fibrosis News Forums | Dan Hughes | Activity https://pulmonaryfibrosisnews.com/forums/members/danhughes/activity/ Activity feed for Dan Hughes. Sat, 04 Apr 2026 22:03:26 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 cb642c44443f40d068931ef654efc8bd Dan Hughes posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/22188/#acomment-22307 Tue, 08 Sep 2020 14:55:11 -0500 Charlene and Mark
I had a longer than normal Hospital stay, due to my excessive Juiciness! The 4 chest tubes would not stop filling my Juice boxes! So the hit me with 3 days of mega steroids in IV form. Seemed to do the trick, ok so now I have been crying (I’m not a crier) just the weirdness of the drug.
I look over at screen and see topic… Read more

In reply to - Dan Hughes posted an update On August 17, 2020, I got the call to come to the Hospital, a lung set had been identified that fit my criteria. The next day at 5 pm a 6 hour operation to swap the lungs. I am […] ]]> ca0ebaba615a6d3ed24d4075016c3874 Dan Hughes posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/22188/#acomment-22229 Thu, 03 Sep 2020 11:03:11 -0500 Thanks for all of your support over many years.
I’m still going to chime in on topics that I can provide some guidance.

We wanted to go to the conference in Texas , but could not swing it. I would have loved to meet Carlene, you write excellent articles.

In reply to - Dan Hughes posted an update On August 17, 2020, I got the call to come to the Hospital, a lung set had been identified that fit my criteria. The next day at 5 pm a 6 hour operation to swap the lungs. I am […] ]]> 4615c90599a02a72c4c244ac631e9504 Dan Hughes posted an update: On August 17, 2020, I got the call to come to the […] https://pulmonaryfibrosisnews.com/forums/activity/p/22188/ Wed, 02 Sep 2020 01:06:41 -0500 On August 17, 2020, I got the call to come to the Hospital, a lung set had been identified that fit my criteria. The next day at 5 pm a 6 hour operation to swap the lungs.

I am still in the hospital on September 1, due to slow drainage from 4 chest tubes , hopefully Friday .

]]> 6 22eb73aedd22831b3fff1edfe15566a1 Dan Hughes replied to the discussion FDA Approves OFEV for Chronic Fibrosing ILDs. in the forum Ofev (Nintedanib) https://pulmonaryfibrosisnews.com/forums/forums/topic/fda-approves-ofev-for-chronic-fibrosing-ilds/#post-23410 Fri, 13 Mar 2020 01:40:54 -0500 Reply to FDA Approves OFEV for Chronic Fibrosing ILDs.

MyDr started me on Ofev before it was approved for Scleroderma.

I am on my 8th month of Ofev, I would recommend to anyone prescribed this drug to eat a big, high protein meal prior to taking Ofev, or diarrhea is almost guaranteed.

the only other notable side effect is weight loss, I’m not sure if it’s the drug or my lung condition causing… Read more

]]> 73faf55029481c421da749fa15ee38f6 Dan Hughes replied to the discussion Taking Cellcept (mycophenolate) PLUS Ofev in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/taking-cellcept-mycophenolate-plus-ofev/#post-22043 Thu, 21 Nov 2019 15:36:29 -0600 Reply to Taking Cellcept (mycophenolate) PLUS Ofev

I forgot to add.

I have been on Mycophenolate since 2017.  At my first appointment at INOVA ALD CLINIC they conducted a blood test for Scleroderma (SCL-70) test, proved positive.

in the spring of 2019 same test was negative, possibly pushed down by the Mycophenolate, and diagnosis changed to IPF and Ofev was added to my medications.  So my… Read more

]]> a0f27bcf520b5ca19e7a82d509f53679 Dan Hughes replied to the discussion Taking Cellcept (mycophenolate) PLUS Ofev in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/taking-cellcept-mycophenolate-plus-ofev/#post-22006 Tue, 19 Nov 2019 18:15:55 -0600 Reply to Taking Cellcept (mycophenolate) PLUS Ofev

I am 59, I have been taking Mycophenolate 3,000mg (1500 x 2 day), four months ago I was started on Ofev 150mg(2x day, at least 10hrs apart), in addition to Mycophenolate .  So far no bad side effects from either medication.

Mycophenolate, lowers your immune system, and it helps suppress the fibrosis.  Using this you have to be careful with… Read more

]]> 81fb00e3f5b78af15704443c8c1f40d7 Dan Hughes updated their profile https://pulmonaryfibrosisnews.com/forums/activity/p/16101/ Wed, 06 Nov 2019 14:23:46 -0600 0 c83049fc654aaa7bcd208d5123f19a3d Dan Hughes replied to the discussion PFF Summit 2019 in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/pff-summit-2019/#post-21668 Fri, 18 Oct 2019 10:24:47 -0500 Reply to PFF Summit 2019

Charlene

My wife ad I considered it, however the cost, Airfare, rental car, hotel put it out of our reach.

I was looking at current info on it and all sessions will be recorded , probably videos, if you could not make it. My Ofev coordinator is going and a few people from our support group are attending and will present it during our… Read more

]]> e3fc97ef9bc4bfe3fc2019406e345939 Dan Hughes updated their profile https://pulmonaryfibrosisnews.com/forums/activity/p/14976/ Tue, 03 Sep 2019 19:53:26 -0500 0 6f5f06190a908a60ab9361ce59fdeff6 Dan Hughes changed their profile picture https://pulmonaryfibrosisnews.com/forums/activity/p/14973/ Tue, 03 Sep 2019 19:47:07 -0500 0 a049f8e0af34808dc8433911afca63b0 Dan Hughes posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/14604/#acomment-14971 Tue, 03 Sep 2019 19:33:19 -0500 Thank you. For years I have been reading it, you and Charlene seem like old friends. Never felt part of the PF family until recently, when my diagnosis changed to IPF . So many overlaps in PF, with Scleroderma. They changed my diagnosis on the basis of the SCL-70 blood test, which is very sensitive. It would be very rare to only present in… Read more

In reply to - Dan Hughes became a registered member ]]> 8dc72c25f4403d8ed761cf3f380aa096 Dan Hughes became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/14604/ Tue, 20 Aug 2019 21:50:52 -0500 3