[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]

Hi @mehta & @msherbert

Thank you both for starting this conversation! Sadly I agree, there are a lot of environmental and occupational hazards that people aren’t aware of that can cause damage to the lungs. I’ve never heard of home kitchen fumes being problematic but it likely depends on what you’re cooking. I know for me, even if I accidentally burn something on the stove, the smoke really bothers me and I try to air everything out right away. Hopefully you’re both able to continue doing what you enjoy in the kitchen and find a way to protect your lungs!
Take care,
Char

[Charlene Marshall]

Hi Jen,

Thanks for writing – what an important topic to discuss! It is really important to look at credible research behind these wristband pulse oximeter’s, as you say, so kudos for doing that and looking into the reliability of them. I wear an AppleWatch personally, version 6 I believe, because it looks at my oxygen levels and heart rate. I was skeptical about the reliability of it at first, but when I was in the hospital for COVID, my levels were really low and I had two of the pulse oximeter’s on my finger as they were reading differently, and the RN asked me to check my watch too and used it as the tie-breaker (in addition to how I was presenting clinically). She believed in the reliability of them so from there, thats been good enough for me! I also carry around a finger pulse ox in my purse.

In addition to these two capabilities, I also like that it has the fall detect and emergency services feature on the AppleWatch which you can read about. Just makes me feel safer!
Goodluck, your Mom is lucky to have you advocating for her.
Take care,
Char.

[Charlene Marshall]

I’m sorry to hear that they don’t Jeannine. Know that we are here for you on these forums!
Take care,
char.

[Charlene Marshall]

I’m sorry to hear that they don’t Jeannine. Know that we are here for you on these forums!
Take care,
char.

[Charlene Marshall]

@gefski

Hi Glenn:

I was very intrigued by your post as I am an avid watersports fan as well. I enjoy kayaking and paddleboarding, though I run out of breath while trying to keep my balance standing on the paddleboard; its just as fun sitting down or kneeling. I take my oxygen with me on both devices! I use a D-sized cannister (the new term for it, may actually be M3, I can’t remember) and put it in a backpack that I got on Amazon. The nice thing is, the cannisters float and it doesn’t matter if they get wet, unlike the concentrators. The appropriateness of this 02 of course depends on how much 02 you’re needing. I am time-limited with using the cannister, which is one thing I don’t like, but its better than not being able to go at all. Can your doctor or NP help you find the best 02 source for being able to do this? My team is thrilled I am keeping up with this because its good exercise, so they’re always happy to help me find solutions to make it work.
Goodluck!
Char.

[Charlene Marshall]

Hi @steve-dragoo ,

Not a problem at all, we just wanted to post that reminder to ensure emails aren’t being left publicly, most importantly to protect our members’ privacy. In a PM/DM is totally fine!

Hope you’re doing as well as possible! think of you often.
Char.

[Charlene Marshall]

Hi Charles,

There’s been a lot of conversation about Zinc on these forums. If you use the search feature by going to the top right-hand side of the page and start typing in Zinc slowly, all the conversation threads should come up. I don’t have any personal experience to share with you, but I know a lot of people have started or continued taking Zinc since this article was released.
Take care,
Char.

[Charlene Marshall]

Hi Susan,

Thanks for sharing. Sorry to hear you deal with a terrible cough with lots of phlegm, that sounds terrible. I think the prescription of inhalers likely depends on what type of cough you have with IPF, dry or wet etc. Hopefully your doctors can find something else to help manage the cough!
Take care,
Charlene.

[Charlene Marshall]

Thanks for sharing your experience with us Michael, and sorry you can relate to medications making you feel worse. I am on the Respimat as well, but can no longer take Symbicort as its too hard for me to take a turbuhaler. I hope the discussion with your pulmonologist about this goes well.
Take care,
Char.

[Charlene Marshall]

Hi Steve,

Interesting post – thanks for sharing your experience! Its albuterol that I’m struggling with actually, along with another inhaler. When the prescribed inhaler dose went up, my symptoms seems to get worse. Goodluck and I hope your symptoms and test results continue to stay stable; sometimes that the best we can ask for.

Take care,
Char.

[Charlene Marshall]

Great advice Jim, it certainly doesn’t sound like you’re a “dumb old carpenter” to me 😉 Glad you have your wife there as a strong advocate for you too!
Take care, and thanks for taking the time to write,
Char.

[Charlene Marshall]

Hi Brenda,

Thanks for writing and contributing to this topic. I hope you’re finding the forums helpful; there is a ton of information here and some really great people. It is hard when doctors share conflicting information, I agree, and questioning him as to whether it was mild or moderate was good. We certainly have to advocate for ourselves! I think so much of the testing is subjective to the doctor’s opinions, that is what makes it hard for me too. If you can get a second opinion, or request a new physician, that is okay too… never feel guilty for doing that. The management of this disease is important to be done well and can be time-sensitive for some, so don’t be afraid to ask for additional opinions if its possible.

Take care,
Char.

[Charlene Marshall]

Hi Willie,

Thanks for taking the time to write and share your experience with this topic. So sorry to hear COVID wreaked so much havoc on your lungs and body, that sucks. I do have an appointment to revisit the regimen I’m now on for my inhalers, I don’t like how they make me feel so I’m hoping to go back down a step. My increase was due to post-COVID symptoms too.

Take care,
Char.

[Charlene Marshall]

Hi Gary,

No, the only two FDA-approved drugs on the market to slow down the progression of IPF are Ofev and Esbriet. I take Ofev, and its actually not that drug I’m struggling with; its my inhaler regimen. I find when I increase one of them in particular, my symptoms tend to get worse so I was curious about others’ experience with this.
Char.

[Charlene Marshall]

Beautifully said @constancedc1 ! Thanks for taking the time to write out and share your thoughts with the forum. Information is key to living with this disease, because we can tailor our actions and behaviours to try and live the best we can with it when we know how to do that. I’ve done several rounds of pulmonary rehabilitation and while I find it exhausting, I agree with you in that it really does help!

I know others will appreciate hearing from you too, so thanks again for sharing. Wishing you all the best.
Char.

[Charlene Marshall]

Thanks for sharing your thoughts with us on this thread, David. It feels truly unfair that not only do we have to navigate the feelings of having this disease, but that we also have to take on the implications of sharing it with others. I hope you find a way to be able to talk with your parents and daughter and feel supported. I’ll be thinking of you!
Take care,
Char.

[Charlene Marshall]

Gayle, I love the ending to this post as it made me laugh. Thank you! Puppies are the best and I’m glad he’s become a positive topic of conversation for you 🙂
Take care,
Char.

[Charlene Marshall]

Hi Julia,

Thanks for sharing your thoughts on my post … I completely agree: talking about the disease all the time is tiring both emotionally and physically and its hard to convey just how serious it is. Hang in there and know that we’re hear for you on this forum.
Charlene.

[Charlene Marshall]

@zebra4018

Hi Mille,

Thanks for sharing – sounds like you’re well-equipped to handle power outages while using oxygen, which is great. I’m you’ve notified your service providers too, that is a step a lot of people forget. One other thing that eases my mind, which people maybe don’t think of, is accessing the car as a power source for our 02 during an outage. My concentrator plugs into my car, so if I ever needed to, I could go for a drive and recharge the device. Something to keep in mind!
Take care,
Char .

[Charlene Marshall]

Hi Jane,

Thanks for contributing your thoughts and experiences to this thread; lots of information shared here about Zinc. I’m glad to hear your doctor encouraged you to try it, as their seems to be mixed physician thoughts on its use. Also glad to hear you’re tolerating Esbriet – I know the gastrointestinal issues can be really bad from Ofev. Take good care and keep in touch. Glad you’ve been reading the posts and hope they are helpful for you!
Char.

[Charlene Marshall]

Thanks for sharing your experience Dennis and wishing you goodluck on your upcoming breathing test. I have one at the end of July too! Campfire smoke bothers me a lot as well, and I always have to sit downwind of it if I join my cousins around the fire at the cottage. Glad to hear you think Ofev is helping you though! Have you tried the sublingual imodium for the diarrea?  I found regular imodium wasn’t helpful for me at all but the sublingual tablets (dissolve under your tongue) made a world of difference for me. My Mom is a pharmacist and recommended it. Maybe worth a try?

 

Charlene.