Charlene
Forum Replies Created
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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 @Rod , thanks for your post. I do take an albuterol nebulizer! I don’t know if it helps long-term but I find my IPF cough is tight, and not productive so when I’m coughing a lot it irritates my chest and lungs. Sometimes when I do the nebulizer, my cough temporarily becomes more productive where I’m able to cough things up (gross, I know) but then it subsides the tightness/wheezing for me which gives me some relief. The used to treat me in the ER with a nebulizer before they realized I had IPF, as I was considered “severely asthmatic”. My pulmonologist says taking this won’t hurt me, so if it gives me some temporary relief from the painful, dry cough then I’m willing to try it. Not sure if this helps?
Charlene.
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Hello @Mom from a fellow Canadian! There are ways to explore getting Ofev covered. I believe it was just recently, 2023 maybe? Where OFEV was approved under the Ontario Drug Benefit plan under certain circumstances. You’d have to look it up, assuming you’re in Ontario but there are also other ways to get it partially covered including grants from the drug company itself or Compassionate Care grants. Will your Mom’s doctor support a conversation about this? There are many patients who get majority of this drug’s costs covered, it may be worth looking into. The Canadian Pulmonary Fibrosis Foundation may have more ideas too!
Take care,
Charlene.
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So glad you’re here, Sam!!
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Hi All –
Diahrrea can be such a terrible side effect of OFEV. For some, I’ve heard it impacts their quality of life so negatively, they opt not to take it. I struggled with this side effect in the beginning to and had to go up/down on dosing several times before I could tolerate it. One thing that helped immensely was the Imodium *sublingual* tablets – not the oral tablets. My Mom is a pharmacist and she recommended this to me and it made such a difference, now I can tolerate the 150mg dose and rarely have issues. This sublingual tablet dissolves under the tongue without water so you can take it anywhere and seems to work a lot faster (and better) for me. For those struggling with this side effect, this may be worth a try for you. Good luck!
Char.
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Hi @Larry70
Thanks for starting this thread!
Shortly after my diagnosis in 2016, I continued on with all of my sports/activities, including long walks and runs on a treadmill. As you can imagine that got harder with time and now I require 02 while using the treadmill but it’s still a very helpful form of exercise. As others have mentioned, pulmonary rehabilitation programs can be so helpful for those of us with IPF/PF. I’m glad your Pulmonologist agreed to this, and you’ll be monitored while doing exercise.
The dry cough can really be a pain when it comes to activity and it’s important to monitor whether it’s dry cough + low oxygen, or “just” a dry cough. For this reason, it might be good to exercise with an oximeter or like others suggested, an AppleWatch which can monitor your 02 levels. You’ll likely get someone tracking this in a pulmonary rehab program but I find it so helpful for my own reassurance to, that when I get winded and coughing, its not always because my 02 levels are low which of course can be dangerous.
I hope the pulmonary rehab program goes well and is helpful!
Take care,
Charlene.
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Wonderful to read this message! I’m glad to hear you’re adjusting to Ofev okay at 100mg. I know it’s not easy; however, we take the bad with the good and please to hear you are able to walk and enjoy the beautiful weather. It’s the small moments that make all the difference.
Charlene.
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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.
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Hi Mary,
Thank you for sharing a bit about your story and well wishes for 2025! May I ask, is there a reason you’re not on either of the anti-fibrotic drugs? I don’t ask to be nosey, but I’m always curious about fellow patient’s experience with either Ofev or Esbriet. Some pulmonologists are good at recommending them to patients and others aren’t. Had you tried either of them so far? It sounds like your disease progression is slow without the anti-fibrotic which is great.
Take care,
Charlene.
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Hi Polly,
Thank you for sharing this information, I am sure other patients will find it beneficial. I also have a post-nasal drip since my diagnosis and I hate it! I feel like it forces me to cough even more than I might just from symptoms of IPF, and it’s particularly bad when I’ve been sick like I have been in the last month. It feels like the post-nasal drip is the longest part to go away. Thanks again for sharing your thoughts and contributing your experiences to our forum community, it is appreciated.
Char
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Hi Bruce,
I’d be really interested in hearing how you make out with this planning! In sounds like a doable option in theory; I suppose it could depend on the RV hook up and that it can supply the 02 concentrator enough but I would imagine it would. This certainly would be an option as the concentrator would always be powered and then the tanks at night. You could also plug in the POC at night likely at a hotel. I flew to California using my Respironics SimplyGO in 2022 as my 02 needs were lower then and I could manage. From there, we drove around the coast with it plugged into my friends car so I would imagine this plan would work. Let us know as you continue to develop it!
Char.