Charlene
Forum Replies Created
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Hi @DMoffett ,
I actually wear my cannula backwards at night to help it stay in place! I know it sounds weird, but the “v” part of the cannula I put at the back of my head and tighten it versus under my chin and this has worked really well for me as the only part of the cannula that is in front is the prongs in my nose. I know some people found this wasn’t helpful for them but it was a game-changer for me wanting my cannula to stay in place. Hope this helps!
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Hi DMoffett,
I remember trying to navigate the loud oxygen concentrators at night and learning how to sleep with the background noise! I put my concentrator in another room or just in the hallway and purchase the long tubing off amazing to run it into my bedroom. That keeps the noise level down and promotes better sleep overall for me. I also use Loop ear plugs – you can buy different ones on Amazon that are either noise-cancelling fully (I get not wanting to use these for safety purposes) or there are some great for sleep that reduce external sounds. Hope these suggestions help!
Take care,
Charlene. -
Beautiful post John, thank you for taking the time to share them with us! I have no doubt it will inspire others, thank you for sharing 🙂
Char.
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Hi @katie-bagshawe,
Welcome back!!! Of course we remember you! I completely understand the need to take some time and refocus on you; grief, the pandemic and the state of the world can be all consuming at times. Congratulations on your son, that is very exciting and I’m sure your Dad is looking down with much pride! We look forward to having you back and welcome your sharing in any / all conversations that feel good for you – I always enjoyed reading your contributions to the forum.
Take good care,
Charlene.
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Thank you for starting this thread Alam! I am also very curious about patient experiences with Jascayd in general, plus taking it with OFEV. I look forward to folks sharing their experience.
Char.
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@Samuel Kirton I am so jealous! Enjoy the Summit. I was there in 2019 when it was in San Antonio and loved it, so much to learn and it’s great to meet people in person as well. My favourite part was the vendor “fair” where you could walk around and meet with different vendors about PF products and services that helped you live well with PF. The presentations were also amazing but the vendor fair also allowed you to network work a bit, which I always appreciate at conferences. We look forward to hearing your thoughts on the Summit once you’re back. Enjoy Chicago too!
Char.
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Pulmonary rehab has been a lifesaver for me on multiple occasions, especially after an acute illness or exacerbation. My local transplant center offers a good pulmonary rehab program that I can do in person but if yours doesn’t or you aren’t close enough, there are some credible online options like: https://pulmonarywellness.org Check it out if you’re interested 🙂
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Hi Debra,
Thanks for this post. I’ve also heard (via webinar) and been reading about regenerative medicine through the use of stem cells for different types of diseases, including pulmonary fibrosis. I don’t know if anywhere is conducting this treatment already, but it sounds like the representative you heard speak says there is? I’m leery about companies conveying this treatment because I fear it’s for profit/financial gain for them, unless they represent a hospital or clinical program. I’m also curious if anyone else has had firsthand experience with this. Please share with us.
Thanks for starting this discussion thread!
Charlene.
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Hi @Millie,
The type of concentrator you’ll likely be best matched with depends on your oxygen needs both during exertion and at rest. I echo a lot of the sentiments below that many POCs that provide sufficient oxygen levels on a continuous flow are heavy and hard to carry around. I use the Respironics SimplyGo machine and it has a little cart so I can wheel it around as needed. Not sure if this is helpful? Can your pulmonologist advise a machine that would be good for you, even if you just rented it for your trip. Good luck and let us know what you find.
Charlene.
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Hi @SueB
This is a great question and something a lot of people with IPF look for answers on. OFEV can be a tough drug to manage due to unpleasant side effects; however, I’ve also heard a lot of patients tolerating it well. For me, a couple things were super helpful that I wanted to share:
1) I took OFEV with meals and usually ate half a meal, then took the pill, and ate the other half. I found taking OFEV with a meal high in protein helpful and I do really like supplemental protein shakes; however, the plant-based ones versus dairy worked better for me.
2) I kept sublingual (that is important!) Imodium nearby at all times. Regular Imodium may work too but my pharmacist recommended sublingual and I found it worked way better and faster.
3) Before I could tolerate OFEV ongoing – at a dose of 150mg twice daily – I ended up having to stop it to give my system a “reset” a couple times, and then slowly titrating back up to my prescribed dose. I think I actually had to do this 2 or 3x before I tolerated it for good. If this happens, please don’t get discouraged! I just wanted to share that it might occur for him. I hope these tips are helpful.
Charlene.
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Hi Everyone –
In addition to adjusting your position (ie. head elevated), another thing I’ve discovered recently to help improve my sleep and reduce the productive cough I had in the morning, is to have a humidifier beside my bed. This is especially helpful during the cold winter months where the furnace is running a lot. Thankfully, I don’t have a lot of trouble sleeping but I found this reduced the amount I coughed when waking up in the morning. I just purchased one off Amazon and it made a big difference.
Charlene.
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I’m sorry for your loss James. Sending you love.
Char
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Hi Vance,
Thanks for sharing about the ring – interesting! Many members of the forum have discussed the use of an Apple Watch to monitor their oxygen levels, but I’ve not heard of this ring and I’m sure people will be curious, I appreciate you sharing! The Apple Watch is far pricier and understandably out of some folks’ budget. I’m going to look into the ring as well.
Thanks,
Charlene. -
Merry Christmas Vance!
Are you noticing any other side effects from the Tyvaso? -
Hi Everyone,
The management of OFEV side effects is a popular topic of discussion on our forums and for good reasons – they can be really hard to manage! I am on OFEV at 150 mg/day as well, but had to essentially go off and back on it multiple times, titrating down to 100 mg to test my tolerance before I could manage this dose. I also wanted to share something that was a game changer for me, as recommended by my mom who is a pharmacist…. Sublingual Imodium! I tried regular Imodium and it just wasn’t enough for me to manage the side effects but for whatever reason the sublingual dose was! It was effective in managing the side effects but also was convenient to take anywhere because it dissolves on my tongue. If you try it, let me know if it works for, I never leave home without it!
Charlene.
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I am also sending prayers for your mom @raj1969! I am just curious whether she would qualify for the FDA-approved drugs to manage IPF? The side effects are something to consider when it comes to quality of life as they can be hard to adjust to but just wanted to share if this might be possible for your mother to consider. Keep us posted on how it goes and you’re right – we must never give up!
Char.
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This is a great post Sam and definitely something IPF patients need to be proactive about – travel with a lung disease can be scary! Like other forum members have said, I travel with extra medication, an extra 02 concentrator battery and a list of my medications in 2 spots: a printed out copy I keep with me, as well as a list of them (and all other pertinent health information about me) in my iPhone’s Emergency App. This can be accessed without a password and a lot of medical professionals are now trained to look in this spot. Hope that helps someone 🙂
Charlene.
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Hi Stewart,
I also primarily use a concentrator (Respironics SimplyGO) but find it heavy when moving around the house and I can still get sufficient 02 needs via concentrator or tank. I advocated for a D sized tank, which in my province is covered by provincial health insurance, and ordered a backpack for it to carry out and it’s been a game changer! For longer trips somewhere of course I use a concentrator but it might be worth asking about the D sized tank and backpack for what you’re mentioning. Let us know if you have any other questions!
Charlene.
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I agree with you Bryan! There’s also a bit of an assumption from society that our convenient technology devices (ie. AppleWatch) can accurately track our 02 levels. While certainly better than nothing, my Pulmonologist recommended I use my AppleWatch 02 tracker to cross-reference my oximeter reader only, but rely on the oximeter more. They are super cheap to purchase, even at Walmart. It’s really important to see the “data” and be able to correlate it to how we feel.
Thanks for sharing.
Char
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Hi Stephanie,
Thanks for your reply to this thread. Unfortunately, there can be a familial or hereditary components to this disease. It seemed rare when I first heard about it, but I know several patients now where siblings all have IPF or a Dad and son for example. You can read more about this if you’re interested on: pulmonaryfibrosisnews.com. Hope this helps!
Charlene.
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This is a great post for discussion @Samuel Kirton and thank you for sharing your thoughts too, Linda! I agree, one must be very skeptical of non-prescribed therapies in an organ as precarious as the lungs. I’m not discouraging folks from doing their research into various options for symptom management, especially because treatment for IPF/PF is very limited; however, it should be done in partnership with your medical team in my opinion.
Take care,
Charlene.
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Thanks for sharing this resource link @jaymead, I’m sure it will be helpful for others’ looking into strengthening their respiratory health. There’s some great apps to help with this too!
As for the question about golfing with oxygen, I’ve done this! I have a small D-sized tank that I strap into a backpack and have played golf this way. No one was bothered by it and although I was tired by the end of the day due to the heat and walking (even with a cart), it was very manageable. Using a tank vs a POC is of course dependent on your oxygen needs but if you enjoy golf, I’d definitely consider this option. Good luck!
Charlene.
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Hi there!
Lots of information about Esbriet / pirfenidone on this forum 🙂 Feel free to use the ‘search’ function on the right-hand side of the main screen and do a search, lots of helpful contributions should pop up. Good luck!
Charlene.
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Hi @Sis
I resonate deeply with your post! This is one of the hardest parts of having PF, which is largely an invisible illness until we are dependent on oxygen. It is very hard to have others’ understand what it’s like to live with this disease. I’ve done an activity for my friends and family (though, I’m not sure if it would be helpful, as I know medical professionals likely wouldn’t do it) but have them put a plug on their nose, then breathe only through a straw and walk around. They get a bit of an idea of how difficult it is to breathe. I also wrote a column on PF news about how hard living with the invisible illness of PF is; take a read if you’re interested and know you aren’t alone here.
Char.