[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]

@pbesio

Hi Pete,

Wow, thank you so much for sharing your experience with the generic version of Esbriet and the respective costs; it’s always so helpful to hear a first-hand experience. I hope this number reflects the real cost on the bill as well! So happy for you with the reduction of this astronomical cost for this drug.

Char.

[Charlene Marshall]

Thank you all for sharing your personal experience with Zinc, along with your opinions on the article… I found it very interesting as well! Similar to Chuck, I’m curious if anyone has brought this up with their doctor and obtained any feedback? It’s a credible article from a reputable site so hopefully a physician out there will read/listen to it. If you get any feedback from your doctor, please let us know.
Take care,
Char.

[Charlene Marshall]

Absolutely unfair! Great words Denise, thanks for sharing!

[Charlene Marshall]

@anne-tarantino

Hi Anne,

So nice to hear from you! Thanks for writing and contributing to this thread, though sorry to hear your PF is getting worse and your husband is picking at you. It’s so hard for others to understand what feeling short of breath and/or exhausted all the time is like, and on the flip side, it’s exhausting for us to navigate their lack of understanding. Just a thought that came to mind: has your husband participated in any support groups since your diagnosis? I know they aren’t for everyone, but I wonder if the disease (not you!) is getting to him and his picking is stemming from anger at the PF and what its doing to you. It might help for him to have a space to express that safely… do you think he’d be open to trying that? Sorry I don’t have a solution that is really helpful. I just know for me, even as the patient, being able to connect with others who truly understand is invaluable and he might benefit from connecting with other caregivers.

Curious to hear your thoughts,
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.

[Charlene Marshall]

@vmcurrie62

Hi Virginia,

Thank you for being so vulnerable and brave with sharing how this disease is impacting you. I hate it too, and I’m so sorry you’re dealing with it!
Earlier today someone told me that it was refreshing to simply hear someone say they hate IPF and it was equally therapeutic for me to say. Please don’t ever feel like you have to apologize on this site, we want to be here for you and only wish we could do more. I suppose the one thing we all have in common is just how much we “get it” and how hard it is to have IPF.
Please reach out anytime if you need support, I’m thinking of you.
Charlene.

[Charlene Marshall]

Hi @sharonmacmillan

Thank you so much for sharing this information, I have no doubt that it will be extremely helpful for others! I really appreciate having this information myself too, so thank you.
Charlene.

[Charlene Marshall]

Well said Norm! I find this forum so helpful because its filled with people who truly “get it” and what its like to live with this terrible disease.

Please don’t anyone feel like you have to apologize for venting – we’re here for you!
Char.

[Charlene Marshall]

Hi Phil,

I often have trouble sleeping but its because my mind races vs. symptoms of this pesky illness. I actually take a melatonin – very low dose – every night to help me sleep and shut my brain down. Mindfulness helps me too; not for everyone but something that is effective for me. May be worth talking to your doctor about in case its somehow linked to the increased need for 02?
Char.

[Charlene Marshall]

I am also curious about this Charles, and would love to hear from anyone who has spoken with their physician about zinc.
Char.

[Charlene Marshall]

Oh interesting @philipryan… I am also curious as to why she advised against it? Did she give you any insights into that?
Char.

[Charlene Marshall]

Thanks for sharing your story with us, Nina! I’m glad you sought out a second opinion from another doctor as well as I was shocked to read one actually gave you a year you’d likely live until – that’s absurd in my opinion. Glad the second doctor was so helpful and that you proactively took care of yourself by doing things like putting in the swim spa, that’s amazing. If I could afford it, that would certainly be something I would install as well, as I love to swim and I think it would be amazing for my lungs. I hope you had a great birthday coming up and thanks again for taking the time to share your story with us.
Take good care,
Char.

[Charlene Marshall]

Here it is Doug:

https://www.cedars-sinai.org/newsroom/zinc-found-to-play-an-important-role-in-lung-fibrosis/

[Charlene Marshall]

I agree @christie-patient… this article was super interesting to read, not something I’d heard of before, even though I knew of many of the other benefits.
Char.

[Charlene Marshall]

Hi Millie,

Oh this is interesting, thanks for sharing! I had similar thoughts as you but glad to hear it’s helpful. I know a lot of people struggle with diarrhea on Ofev so this is good information to have and share.
Take care,
Char.

[Charlene Marshall]

Thank you for sharing Denise, it’s always refreshing to hear of positive experiences with physicians and how they can help us on our journey. Sorry to hear you’re dealing with pain, but glad you have a good doctor in your corner.

Take care,
Char.

[Charlene Marshall]

Hi Jeff,

Thanks for writing and contributing to this topic thread. Wonderful to hear your work from home situation has been conducive to you being able to continue working. That is great and I’m glad you haven’t been faced with the decision whether or not to stop working. I am lucky as well and have a very flexible workplace, and am primarily still working from home which I enjoy.

Take care 🙂
Char.

[Charlene Marshall]

@philipryan

Hi Phil,

Thanks so much for sharing your thoughts on this topic, and for your insightful perspective. I know some people will find it comforting to read your words for sure 🙂
I was the facilitator for Noah’s new book and we discussed religion a lot. There are some references to it of course in some of the chapters written by authors who are very religious but because the book is intended for anyone, we had to be really careful with our mentioning of religion to be inclusive to all. Thank you for reading it and we hope you found it helpful!
Char.

[Charlene Marshall]

Thinking of you Rhonda as you navigate the next stage and figure out what is your new normal. Certainly not an easy task. Thanks for sharing your story and know that we’re here for you.

Take care,
Char.

[Charlene Marshall]

@vmcurrie62

Hi Virginia,

Thank you for taking the time to write and contribute your thoughts to this important thread. I remember your story of being a cardiac nurse, and the difficulties you’ve faced in your profession following this cruel diagnosis. I’m so glad first of all that you aren’t experiencing any side effects of Ofev, that is wonderful news and hopefully the insurance continues to cover the astronomical cost of this medication. I’m also glad you have wonderful coworkers and assistants that hopefully allow you to work a bit longer on the night shifts. Praying for you and I appreciate you taking the time to write, I know many others will resonate with your experience. Thank you for what you do as well – nurses are (of course) dear to my heart!
Char.

[Charlene Marshall]

Hi Debra,

Thanks for contributing your thoughts to this thread. It certainly is hard to find that balance of acceptance and being thankful; it’s a process that sometimes I feel like I’ve done well and other days not at all. Everyone processes things differently, do you think you and your husband could work through it with the help of a counsellor? None of us should really be expected to figure this out on our own. Full disclosure: I am a therapist so I’m a bit bias in terms of how helpful it can be, but just a suggestion.

I’m so glad you have found comfort in your faith, that is important on this journey and I know many others have as well. Thank you for your kind words; I would never have picked this path for myself but I appreciate the opportunity to provide support to others. Take care of yourself and thanks for writing.
Charlene.