[Charlene Marshall]

Hi Margo,

Thank you for sharing a bit about your husband’s story, I’m sorry he’s going through this. I remember the first few months post diagnosis; everything felt scary and like a scramble to make a ton of changes. As others have said, remember to take care of you through it all.

Regarding Hawaii, if you ever want to talk more about this, feel free to reach out. I was diagnosed in 2016 and went to Hawaii for three weeks in 2019 and managed quite well. I took my portable oxygen concentrator with me, so happy to share any details with you. The other thing is: if your father/father-in-law could stop smoking in the basement, I’d say that is arguably the most impactful thing… or it would be for me anyways. As my IPF progresses, I can no longer tolerate cigarette smoke. Like, I’ve been hospitalized or had to have 911 called because I inhaled secondhand smoke in public and it impacts my breathing terribly. While this may not be the case for your husband right away, it could be eventually and I know smoking cessation can take a long time for some people. Just my two cents!
Welcome to the forum though, and please don’t hesitate to reach out for support – we’re here for you!

Charlene.

[Charlene Marshall]

Hi Harold,

That is so interesting, thank you for sharing that information! Many people in our forums community struggle with the side effects of OFEV, so I have no doubt others will find this helpful. I often refer people to the Immodium that is dissolvable, under the tongue, for whatever reason that worked well for me compared to the regular oral tablet. I still had to come off OFEV multiple times and titrate back up on it. Even better if some yummy cinnamon bread fixes the problem – so interesting, thanks for sharing!
Take care,
Char.

[Charlene Marshall]

Wow, thank you all for sharing this!
My portable concentrator (POC) is a Respironics so I was worried. Glad to see it’s CPAP machines and not POCs, as my machine has enabled me to travel for many years without issue as its also FAA compliant. Important information for folks who use the Respironics CPAP machine.
Char.

[Charlene Marshall]

Hi Everyone,

Whenever I see anything that talks about reducing OFEV side effects, I’m quick to read because I struggled with the GI side effects terribly from OFEV when I started it. In fact I had to titrate up and down on my dose a couple of times before my body would even tolerate it. I am happy to share I found a couple of tricks! First, I always keep *subcutaneous* Imodium on-hand. This is the one that dissolves under the tongue without water. For whatever reason, it works way better for me and almost instantly… far superior to the regular oral Imodium tablet. My mom (a Pharmacist) recommended I try this and it was a game-changer. Second, I have to eat a very protein-filled breakfast with my dose of OFEV or I’ll struggle to tolerate it. My “go-to” easy breakfast that is filled with protein is a simple protein pancake: 1/2 cup of dried oats, 1/2 cup of egg whites and 1 egg, mix well. Heat a pan with some coconut or avocado oil and add the mixture to the pan then flip as it solidifies. I usually top it with a bit of berries, honey, yogurt, etc (make it your own) but this is a substantial amount of protein and I feel the best after eating this and taking OFEV. I hope this is helpful to others!

Take care,
Charlene

[Charlene Marshall]

Hi Gavin:

So sorry to hear of the struggles you’re having with getting the NHS to review your previous scans and address your symptoms. Do you have a primary care physician? He/she should be able to refer you to a specialist to compare the scans. In Canada, we need a referral to even get a CT scan, there is no option to have it done privately; did someone refer you for the CT scan you had? If you’re truly having low oxygen levels (not “just” short of breath/breathlessness), you should go to the ER at NHS and they shouldn’t discharge you because hypoxia can cause damage to other organs. Bring an oximeter with you and show them the low levels, or take pictures of it and have them remeasure it in the ER. Sounds like a super frustrating experience for you, but remember we’re our best advocates (as exhausting as it is sometimes).
Take care,
Charlene.

[Charlene Marshall]

Hi Carol,

Thanks for your questions, I’ll try to answer in short but if you search some credible websites for the following information, they might be even more informative.

NAC stands for N-acetylcysteine, which is a dietary supplement and is an antioxidant. There are some studies suggesting it is helpful in IPF and other lung diseases, but nothing has been proven to be effective with certainty. We strong encourage anyone to speak with their doctor before starting NAC, because as Bruce mentioned above, there are some risks to it.

Both pulmonary fibrosis (PF) and idiopathic pulmonary fibrosis (IPF) are part of the interstitial lung disease family, which include 200+ different types of lung diseases. There are different types of PF and different causes (environmental, radiation-induced etc) and ‘idiopathic’ is just a fancy way of saying they don’t know what caused IPF. Hope that helps, but there is an abundance of information on this and other websites as well.

Take care,
Charlene.

 

 

[Charlene Marshall]

Hi Scott,

Thank you for your kind words, and I’m thrilled this forum has been helpful to you… it sure has been a labour of love and wouldn’t be possible without the vulnerability and contributions of everyone here. I think the patient-to-patient sharing is what makes this site so special, of course I am bias though ;). I’m also thrilled to hear the book has been helpful to you, also another labour of love throughout the past couple of years!

Take care and thanks again for your kind words.
Char.

[Charlene Marshall]

Agreed Scott, the Pulmonary Fibrosis Foundation’s website is a wealth of knowledge about this disease. I encourage folks to use it as one of their primary (if not their primary) source of information about IPF. Take care!

[Charlene Marshall]

Thank you all for sharing your insights in response to @Stella ‘s question about depression. Unfortunately, I think this is a very common “side effect” of IPF, especially with the way many doctors diagnose us and inform us of prognosis’ that are outdated (ie. 3-5 years to live). I’m glad conversations are happening across patient platforms on how to handle the depression and anxiety that accompany this disease. Thanks again for sharing!
Charlene.

[Charlene Marshall]

Hi @gavpowers77

I am so sorry you’re having this experience! I always say unless someone has experienced true breathlessness, they have no idea how terrifying it is and I’m very sorry the doctors won’t listen to you by the sounds of it. Chalking it up to anxiety must be so infuriating! It sounds like you might need to “prove” your hemodynamics (ie. oxygen rates, blood pressure, heart rate, etc) when they are abnormal. Take a video of yourself and then down to your wrist or finger – however you measure your 02 rates – and ensure its time-stamped. Oxygen in the low 80s is really dangerous and with proof of that happening to you, no doctor should question what is going on. I’m not sure if this is helpful? Also write down trends, note when you BP/HR are high and what you’re doing and time it, so that theres a pattern, this might interest the doctors as well.

Its not uncommon to “not see” fibrosis on an HRCT or X-ray unfortunately. I know tons of patients where their scans haven’t shown this, and interstitial lung diseases (ILDs) are really complicated to diagnose. From my understanding, there are over 200 different types of ILDs and not all are fibrosis-based so other things could be going on. Have you had your c-reactive protein checked in bloodwork? That is in indicator of inflammation and might be insightful for your doctors. Hang in there and keep pushing – a lot of doctors unfortunately chalk these things upto anxiety due to our age. It wasn’t until a nurse discovered my low 02 levels herself (didn’t listen to me telling her they were low) that things were kicked into action for me, because “I was too young” to have a lung disease. Keep in touch and I hope some of this information is helpful.

Charlene.

[Charlene Marshall]

Hi @canalblue

Thanks for your post. I’m not sure if you’re thinking of Steven Strum who is the MD on our site and relatively active with sharing some relevant and credible research and resources for IPF? If so, he doesn’t have IPF but does treat patients with it. He has another rare disease but it isn’t IPF, just so you have that clarification.
Take care,
Char.

[Charlene Marshall]

Hi @vangie

thanks for sharing a bit about your story and upcoming snorkelling adventures – I love to snorkel, it’s one of my favourite travel-related activities but I admit, it is getting a lot harder. A couple of tips that have made it a little easier for me include:
1. Keep your oxygen nearby (ie. on the boat you’re snorkelling from or on the shore of the beach)
2. try to snorkel in shallow and calm waters, as battling any currents or waves will take even more effort/energy and may leave you feeling breathless faster.
3. come up for air PROACTIVELY. Meaning, if you’re starting to feel short of breath or winded come up for air, the longer you wait and the more “air hungry” you are, the more likely you’re going to inhale too quickly and potentially take in water from your snorkel. I can’t speak about this one enough!
4. Stay close to the surface when snorkelling and if you go under fully, don’t go too deep.

I am not endorsing anyone snorkel with IPF or saying its safe, but if you do, these tips should help you have a better experience. Hope this helps!
Char.

[Charlene Marshall]

Thanks for your comment John. I also have the Phillips Respironics SimplyGO POC and my only compliant is that it is heavy! I also had to get a backpack, which has made it a lot more manageable and its the POC that works best for me, hands down. Might be worth exploring as well @fmarzetta?

[Charlene Marshall]

Hi Roger,

Does your local transplant hospital (or the nearest one) have a support group, either virtual or in-person? Sometimes they have disease-specific groups or even age-specific which I find a lot more relevant than some of the generic PF groups online. Just a thought if you haven’t checked there 🙂
Char.

[Charlene Marshall]

I completely agree with your assessment of this Michael. I also tried it, not enjoyable unfortunately. If others’ have a positive experience, please feel free to share.
Take care,
Charlene.

[Charlene Marshall]

Thank you for sharing your story Laureen – wow, 22 years since your diagnosis, that is amazing. Congratulations! Unfortunately, a lot of the literature and websites on PF out there still cite the 4-5 year prognosis rate, and that is oftentimes the first thing people see when they look up this dreaded disease. Those rates were published prior to the development of the two antifibrotics but people don’t tend to realize that and are understandably quite scared when they read the prognosis rate. Your story will inevitably help people, thank you for sharing it.
Charlene.

[Charlene Marshall]

Hi Barbara,

I was contributing to another thread on this post and saw your reply – absolutely I meant sublingual! So sorry about that error, everyone. I mean the tablet that gets absorbed under your tongue, which is sublingual.
Take care,
Charlene.

[Charlene Marshall]

Thank you for sharing Don! I find this so interesting. Love what we discover on this forum!
Charlene.

[Charlene Marshall]

Hi Don ( @done )

I’m not sure what the results of the longitudinal survey were, as I ended up coming off that project and I’m not sure it was brought to fruition. I also believe there was a lot of attrition through the data collection period You could email [email protected] and see if they could provide any additional information for you? I believe Pilant Therapeutics are revisiting EGCG benefits and I’d seek out information there as my primary source. Sorry I don’t have more insight to share!
Take care,
Charlene.

[Charlene Marshall]

Hi @joyhunton,

Thanks so much for your post and being part of the forums. Unfortunately, we don’t have the ability to make our forums page private, or whether the Google search engine picks up content for a public search. A few members have shared this concern with us, and it would be nice if the content could be contained in this website but unfortunately it isn’t possible. This information is shared when anyone/everyone signs up for the forums and participants agree to the terms, so I’m sorry to hear it was a surprise. We’re glad you’re part of our conversations though, but understand this is unsettling. If you have any further concerns, please don’t hesitate to connect with us.
Take care,
Charlene.

[Charlene Marshall]

Carol,

My guess is that your doctor prescribed OFEV, not OLEV? The side effects are hard to adjust to yes, especially the GI ones but I’d ask him/her about how to manage them as OFEV is intended to slow down the progression of the fibrosis in your lungs, which is a proactive measure to manage the disease. From my experience, and what I’ve heard from others, getting on it sooner than later is better.
Take care,
Charlene.

[Charlene Marshall]

That is interesting Cheryl, thanks for sharing. When I was first diagnosed, I was exploring salt rooms and the use of Himalayan sea salt and tried it but didn’t find any noticeable differences. I should try again, no harm in this type of effort so if it helps its a bonus 🙂
Take care,
Char.

[Charlene Marshall]

I couldn’t agree more Diane, thanks for sharing this! Pulmonary rehabilitation has helped me tremendously over the years as well and I wish it was recommended more.

[Charlene Marshall]

Thanks John! This website is indeed the most credible site to find IPF studies or clinical trials, many of the others are not vetted for credibility, however, this one is. Thanks for sharing for our members!
Char.