Pulmonary Fibrosis News Forums | Pamela | Activity https://pulmonaryfibrosisnews.com/forums/members/pamela/activity/ Activity feed for Pamela. Thu, 09 Apr 2026 06:45:51 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 b808e1ab19eb51f41b4b64572b027cbd Pamela replied to the discussion Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this? in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/recent-pulmonary-hypertension-with-ild-diagnosis-how-can-i-manage-this/#post-38212 Fri, 18 Apr 2025 01:52:50 -0500 Reply to Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this?

Thanks for the heads up on Slidenafil and Tyvaso. Looks like most everyone here has had a better experience with Slidenafil.

I talked to my regular Pulmonologist and she asked me to take the HRC, so I’m scheduled for a week and a half from now. Yes I’m scared but my doctor said she would be doing the HRC herself, and promised me a lot…

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]]> 13430c861f64fa2cac2d827863e0826b Pamela replied to the discussion Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this? in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/recent-pulmonary-hypertension-with-ild-diagnosis-how-can-i-manage-this/#post-38180 Mon, 07 Apr 2025 04:50:28 -0500 Reply to Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this?

Ah and one more question, when receiving the catheter in the heart, do you remember any of the procedure while they were actually in the heart? Does this hurt? I am definitely nervous about anything going into my heart..

]]> 3f3411134c1da274c750005030ab1d0e Pamela replied to the discussion Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this? in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/recent-pulmonary-hypertension-with-ild-diagnosis-how-can-i-manage-this/#post-38179 Mon, 07 Apr 2025 04:44:49 -0500 Reply to Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this?

Thank you all for the responses, it is nice to know there are others out there who have been down this road and gotten better. Big thanks for letting me know what meditations are prescribed.

Regarding how PA ILD “feels”, is it a heavy feeling in your chest, or does it feel like you can’t catch a full breath? After your initial diagnosis,…

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]]> 4539c69f17189196a0260d5ce7190597 Pamela started the discussion Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this? in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/recent-pulmonary-hypertension-with-ild-diagnosis-how-can-i-manage-this/ Fri, 04 Apr 2025 15:40:36 -0500 Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this?

Hello Everyone!

Recently I had an echocardiogram that tells me I have a mild dialiated right ventrical, doctor says it looks like pulmonary hypertension related to ILD. Also to note, my blood work for my NT PROBNP test has steadily risen, six months ago it was 36, now my score is still considered normal but it is about double at 73.

Could…

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]]> e86bee07cc42bd6176044e80f5a68410 Pamela replied to the discussion CT Scan results questions in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/ct-scan-results-questions/#post-37153 Sat, 08 Jun 2024 18:12:41 -0500 Reply to CT Scan results questions

Hello Everyone!

It’s been a busy week at work so apologies for the later response. THANK YOU for the information from all of you. I do speak with a great doctor who is the head of their department here in Houston, but they don’t have ILD and don’t deal with it day to day, a lot of the people on this forum do, so I learn a lot from…

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]]> 780653a053207f10e205bedb85bbb152 Pamela started the discussion CT Scan results questions in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/ct-scan-results-questions/ Thu, 06 Jun 2024 17:39:23 -0500 CT Scan results questions

Hello Everyone!

I don’t know anyone with my condition outside of this forum so I am coming to this wonderful place to ask some questions about my recent CT Scan. Thanks in advance for anyone who is reading this and can lend some insight.

I was diagnosed with ILD due to Scleroderma in July of 2021. I also have Sjogrens and GERD. I am 49 years…

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]]> b8bef5b9f3a25dfa9c5c44d2c912dc21 Pamela replied to the discussion How did you handle the first time your disease got worse? in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/how-did-you-handle-the-first-time-your-disease-got-worse/#post-35093 Tue, 23 May 2023 22:45:56 -0500 Reply to How did you handle the first time your disease got worse?

Thank you Christine and Vince! I appreciate the kind words. Vince I like your idea about seeking out the PF Warriors and should be at a meeting this month. I could probably use some anxiety meds, I’m assuming this is ok even if I am on Ofev and Cellcept.

Question for you all, how does IPF or ILD actually “feel” to you? I feel something… Read more

]]> 0e324c38a05d7209389414eec34c5070 Pamela replied to the discussion How did you handle the first time your disease got worse? in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/how-did-you-handle-the-first-time-your-disease-got-worse/#post-35071 Thu, 18 May 2023 16:04:45 -0500 Reply to How did you handle the first time your disease got worse?

Thank you Karen God bless you for your kind words.

]]> 871eace31c047ae1f7a832d821dae420 Pamela replied to the discussion Ofev and Plaquenil in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/ofev-and-plaquenil/#post-34507 Tue, 28 Feb 2023 03:45:10 -0600 Reply to Ofev and Plaquenil

Hi Roger, that’s pretty incredible that your DLCO increased so much! Mine went down 4% in the last year and a half, I’m still above 70% , but it’s a little unnerving to think about. I started Ofev last week, hoping for similar results as yours.  In regards to hearing about anyone else with Scleroderma ILD, I feel as if I’ve hit the… Read more

]]> bc70ad459d3f3ba9d602f7e965ab8c07 Pamela replied to the discussion Ofev and Plaquenil in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/ofev-and-plaquenil/#post-34495 Sat, 25 Feb 2023 07:49:27 -0600 Reply to Ofev and Plaquenil

Hi Susan nice to meet you.  You are the first person I know who has had ILD for a as long as you have, 14 years.   Ofev sounds like it has kept you stable for a few years, so I appreciate the feedback.
I just got engaged to an amazing person and this is another big motivator in my wanting to find the right mix of medication, many things to be… Read more

]]> de3bf2c245e9daa99c703d849832a261 Pamela replied to the discussion Ofev and Plaquenil in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/ofev-and-plaquenil/#post-34494 Sat, 25 Feb 2023 07:05:54 -0600 Reply to Ofev and Plaquenil

Hello John thanks for the reply.  I’ve had Scleroderma for 14 years, diagnosed with ILD 1.5 years, but my doctor says I’ve had ILD most likely as long as I’ve had Scleroderma.

You’ve taught me something today- that you can take Hydroxychloroquine, Cellcept and OFEV together, I did not know that was possible.  Sorry to hear about the lung… Read more

]]> 54b333e159066c0f8f7fc44e0d67420e Pamela started the discussion Ofev and Plaquenil in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/ofev-and-plaquenil/ Thu, 23 Feb 2023 04:41:41 -0600 Ofev and Plaquenil

Question for this group, does anyone take both Ofev along with Plaquenil for ILD?  My fibrosis is caused by scleroderma, I was diagnosed in July of 2021, 47 years old.

I was previously on Cellcept and had anger, anxiety, insomnia, so my doctor switched my anti inflammatory medication to Plaquenil.   I would like to add an anti fibrotic as… Read more

]]> 5ba75b69561da4fc6e938e8b66c41098 Pamela replied to the discussion Starting Ofev in the forum Ofev (Nintedanib) https://pulmonaryfibrosisnews.com/forums/forums/topic/starting-ofev/#post-32573 Sat, 09 Jul 2022 15:36:03 -0500 Reply to Starting Ofev

Hello Everyone!  I am on Ofev and I noticed this thread has been around a while, hope that someone here can give me some insight regarding HOW Ofev is taken.  I feel silly asking this question but I am going to ask it…

I can’t swallow pills, trust me I’ve tried everything… I always end up gagging.  Currently I am cutting open the top of the… Read more

]]> d37811512d2918760c9d36fa2bde8d74 Pamela replied to the discussion How do you deal with dyspnea? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/how-do-you-deal-with-dyspnea/#post-32418 Fri, 24 Jun 2022 02:00:32 -0500 Reply to How do you deal with dyspnea?

Hello Bob,

Thank you for your kind words and your positive outlook!

Even after a year it’s been trying to NOT think about the disease, but I am slooooowly learning how to focus on getting back to my life again.

I found an interesting article about the mind-body connection that has helped me regarding dyspnea, will post it for everyone… Read more

]]> 23e2bc84a0e049b3cd8e975509681bcd Pamela replied to the discussion How do you deal with dyspnea? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/how-do-you-deal-with-dyspnea/#post-32324 Thu, 09 Jun 2022 04:50:26 -0500 Reply to How do you deal with dyspnea?

Thank you Karen, I greatly appreciate your advice.

]]> f71cc648394f2d2d72792e3d7ed4fdda Pamela replied to the discussion How do you deal with dyspnea? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/how-do-you-deal-with-dyspnea/#post-32279 Thu, 02 Jun 2022 04:42:21 -0500 Reply to How do you deal with dyspnea?

Thank you Christie for the article, I appreciate it very much!
<div></div>
<div>Hi Lystra,</div>
<div></div>
<div>You said that the dyspnea gets worse somedays when you burn the candle at both ends, then you bounce back.  Has your Spirometry/PFT tests had a decline, or has your scarring on your CT scan progressed at all since your… Read more

]]> 8cbf4bc3b806c92b4562f516341a6697 Pamela replied to the discussion How do you deal with dyspnea? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/how-do-you-deal-with-dyspnea/#post-32154 Sat, 21 May 2022 05:37:37 -0500 Reply to How do you deal with dyspnea?

Hello Lystra,

THANK YOU for your response and insight, you’ve helped answer many questions where I wasn’t getting straight answers from doctors.. of course they probably don’t have lung fibrosis, so it is wonderful to be able to get an answer from someone who can relate.

It’s interesting that you also have lung fibrosis caused by… Read more

]]> bf79573c48fe762865702d8b1e692d62 Pamela started the discussion How do you deal with dyspnea? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/how-do-you-deal-with-dyspnea/ Mon, 09 May 2022 15:43:48 -0500 How do you deal with dyspnea?

<div>Hello Everyone!  I am new to the forum and I thank you for the great information I’ve received from everyone’s experiences.  I am glad to have found you guys!</div>
<div></div>
<div>I was diagnosed with Scleroderma – ILD August 2021, It’s in its early stages.  So far my scarring on the CT has not progressed and my spirometry has had only a… Read more

]]> 79da439d576166996d27c9257303171b Pamela posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/33133/#acomment-33152 Thu, 05 May 2022 03:55:43 -0500 Thank you Christie, I am so happy I found this forum too!

I’ve been reading post all afternoon and I am grateful to read about experiences very similar to mine, have learned a lot already!
I look forward to learning from you all and glad I found a place where people understand. Thank you for moderating and reaching out.

Pamela

In reply to - Pamela became a registered member ]]> b2586d38ed59e56758f606bdcec52f7e Pamela became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/33133/ Wed, 04 May 2022 13:52:36 -0500 3