6 Videos Packed with Tips for Reducing Supplemental Oxygen Hassle
I’ve been writing this column for almost two years, and it has been a delight to share with you, get to know you, and learn from your wisdom. I write from my experience as a PF patient and share my struggles as well as some tips I’ve learned along the way.
I’ve devoted many columns to the topic of dealing with supplemental oxygen. I’ve shared what a struggle it was for me to obtain oxygen, and to figure out the ins and outs of using oxygen. I want to pass on what I’ve learned, so I’ve created a series of videos regarding common supplemental oxygen concerns.
Portable oxygen options to use away from home
When I was first diagnosed, my insurance company would not pay for oxygen. That’s another story. I needed to purchase a portable oxygen concentrator to use when walking, so I did a lot of research on the different types of portable oxygen systems to use away from home. In the following video, I share what I know about oxygen cylinders and show you how my portable oxygen concentrator works. I also have my husband demonstrate how to fill liquid oxygen containers for portable use. I hope my previous column on this topic will be helpful as well.
Supplemental oxygen options for home use
I created the next video to highlight the different options available for supplemental oxygen to use at home. As my pulmonary fibrosis worsened, I also needed to purchase a home oxygen concentrator. I share how I raised the money to pay for it and show two oxygen concentrators I’ve used at home, and when we travel. I switched insurance companies to one that pays for my oxygen. Yay!
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As my PF worsened, my oxygen needs increased, and so I switched to using liquid oxygen. I share my experience in this video, and in the following one. Here’s one of my columns that gives more information.
Using supplemental liquid oxygen
This is a video I put together that shows how to use liquid oxygen at home as well as away from home. It combines clips from two other videos. I had to fight to get liquid oxygen, and it has been such a help to me as my disease has worsened. I wrote two previous columns about my five-month fight to get it.
A better way to deliver oxygen at home
Using oxygen at home usually includes a 25-foot or 50-foot cord careening through your home, ready to be snagged on or tripped over. I discovered this system for keeping oxygen tubing off the ground, which makes using supplemental oxygen easier to use at home. This was my Christmas present last year! Here’s a recent column with all the details.
Tips for showering with oxygen
For a long time, I didn’t have to use oxygen when showering. About two years into my diagnosis, it became evident that I needed to. I created this video to demonstrate practical tips for showering with supplemental oxygen. In my accompanying column, I share how hard it was to adjust to using oxygen in the shower, and I provide helpful tips to make to a good experience.
Making oxygen tubing a little easier
Dealing with oxygen tubing can really be a pain, so I created a video about how to make it a little easier. I show you how to make your oxygen tubing lie flat on the floor to reduce tripping, and demonstrate two connectors that help with tubing management. Here’s my recent column that gives some more details.
I’ve also done a few more videos for patients about keeping going during tough times and being a good friend to yourself on this PF journey. I have these videos as well as the ones mentioned above in one place on my website to make it a little easier.
I’d love to hear from you
Do these videos make it easier for you to learn how to manage oxygen? Which video(s) were most helpful to you? Are there any other videos you’d like me to create?
Please leave a comment below or on social media.
(Videos courtesy of Kim Fredrickson)
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Barbara
I would like to thank Kim Fredrickson for her very inspiring and helpful articles. I also want to thank all who contribute to the newsletter as well as those who leave comments.
Besides having IPF I also have Scoliosis, degeneration, back pain. Do you have any articles or information on how this affects IPF...I read somewhere that the lungs could be affected. I am experiencing constipation, lack of energy and back pain. I have had a rectal exam and it showed no
impaction. I am going for a colonoscopy but I was interested in any info you might have.
Gratefully
Kim Fredrickson
Dear Barbara,
Thanks so much for your encouragement! I appreciate it so much :) So sorry you are dealing with so much trouble with your back. Ugh! I don't know of any articles about this. I had a colonoscopy a awhile ago and my doc recommended taking a fiber supplement everyday and that has been helpful. I get the non-gritty kind from Walmart for a lesser price. I hope this helps.
Jacqueline K. Kagy
Hi, I would really like to follow your newsletter but need to know how to access it. Enjoyed the oxygen tips. I have been fighting myself about the need to increase my 02 when up and around. Sitting is still ok without but not up and my POC to 4lpm is really not ok if walking at any pace at all. Ok for pushing a cart in the store but I know still drops-I just don't feel it. As I still work in real estate and have to interact with clients I have not been able to emotionally bring myself to expose that to the clients or my co-workers. I need the income but am also 77. Big wall for me. Looking at getting a treadmill, upping my concentrator to the 10lpm and following the 20 minutes 2-3 times a day. Since 2013 I have had both hip replacements, a laminectomy and an artifical lumbar disc so my exercise has been on a hit and miss basis. Anyway, please send me a contact for your newsletter. Thanks, Kay
Leigh Anne Krulicki
Dear Kim
I have a question to ask. My mom was just diagnosed with ipf and is taking ofev. But she seems to be getting worse with this pill then better. We don't see Dr for another 3 weeks and was wounding if you have heard of this before or does it take time to feel better
Kim Fredrickson
Hi Leigh Anne,
Sosoory your Mom is having such a hard time. Ugh! I don't have personal experience with Ofev, but I know patients can have a lot of side effects. I would not wait 3 weeks to see the doctor. Call the office and explain what her symptoms are and get their advice. Your Mom is blessed to have you by her side. I know it is all so hard for you too.
Kay Julius
My husband had IPF and was on Ovef and I feel it made it worse also.
Kim Fredrickson
Hi Kay, thanks for sharing your experience with us. I know that drug can be very hard on some patients.
Charmaine Nygaard
Kim, The day I read and watched your video, I was just told I need oxygen-and have a flight August 6, 2018. I saw something about Delta giving free oxygen and of some reason, I cannot find the link. You are a life saver-watching your videos gave me more understanding on coping with difficult issue. Delta connection to free oxygen . I saw this while on the site....still looking for it.
Thanks so much, Charmaine
Kim Fredrickson
Hi Charmaine,
Thanks so much for your comment. I'm so glad that my column and video was helpful to you at just the right time. Hope you have a good trip in August :)
Carmela
Thanks Kim...Haven't had a chance to view all yet but very helpful and worthwhile for all of us! In addition to everything else, we have to be engineers and mechanics. Earlier today I had a problem with the cannula, wasn't getting any oxygen and had no idea what part of this contraption messed up. It took at least 20 minutes going thru trial and error trying to figure out the problem, never thinking it was the cannula. Fortunately we have other PFers to comiserate with. That is a BLESSING!!!!!
In referene to scoliosis affecting lungs, I don't know the answer but I have severe inherited rheumatoid arthritis. The rheumatologist explained how RA impacts not only the joints but the lungs and other organs. One speculation from the doctors causing my IPF is the medication I took for the RA for years. Check with your doctor or research a
reputable internet site.
Bless all of us with strength and courage on our journey.
Kim Fredrickson
Hi Carmela,
Thanks so much for your encouragement. So sorry you're having to deal with both RA and PF. Not Fair!!! You are right, we all need one another. Blessings to you as well.
Bernice Field
We need remote controls to operate our machines for active or resting! My husband has been in touch with an America manufacturer who told him, they had never had any requests for this. I think this is untrue. We need this urgently. Please, if you feel it would help you, get in touch with manufacturers, tell them we do need this!
Kim Fredrickson
Great idea Bernice!!!
Rudy Heintzelman
I was diagnosed with IPF a bit over 3 years ago and and very fortunate that I do not yet require O2. However, I went to some very high altitude (9600 feet) and my O2 fell down into the low 60's. The hotel has O2 which resolved my immediate issue. Now I will be traveling again in some high altitude and would like to get a POC to carry with me to use as needed but do not qualify for this. Any suggestions?
Bill Burke
Kim,
I have IPF, but I'm not on supplemental oxygen yet. However, I am the facilitator for a PF Support group in the Williamsburg, VA area. So, the subject of supplemental oxygen is important to me and the membeers of our group. None of our members currently have access to liquid oxygen. Those who need continuous oxygen have a dozen or more oxygen cylinders delivered to them biweekly. that's a lot of cylinders! Liquid oxygen seems much more convenient. But, and this is a big but, getting health insurance approval and arranging for liquid oxygen delivery seems to be all but impossible in this area. How did you go about geting approval and arranging for delivery?
Kim Fredrickson
Hi Bill,
You are right, it is quite a struggle to get liquid oxygen. Here is the link to the column I wrote on how I was able to get it. Hope it is a help. http://pulmonaryfibrosisnews.com/2017/06/27/pulmonary-fibrosis-patient-shares-tips-getting-liquid-oxygen/
Jeanny
Dear Kim,
Thank you so much for the videos! So much very useful information!
Kind regards, Jeanny
Kim Fredrickson
So glad they are helpful Jeanny! Many Blessings.
Shirley Wilcox
Kim, have you any reports on side effects of taking OFEV ? I just started this week, 7/30/18 and at first just had light headedness but yesterday 8/1/18 I had diarrhea several times. I was driving and had to return home, has any one said if your body gets use to this side effect and it goes away with or without anti diarrheal pills? I sure could use some advice. Thanks Shirley Wilcox.
Kim Fredrickson
Hi Shirley,
Good question. I don't take OFEV, but have heard many patients report the symptoms you describe. Many patient's bodies adjust over weeks or months, and the symptoms go away. Some don't and decide to get off the drug. Call your doctor and get his/her opinion and advice. Best wishes to you!
Rachel San Miguel
Hi,Kim my name is Rachel. I am so grateful to you for all the work you do making the videos and your column. Also love that station master. I was diagnosed with IPF in March of this year, 2018. Its been challenging and its not fair. Its awful disease. Thank you for all you do. I'm happy you got to go to your son's wedding and got to dance with him. Can you tell me where i can watch your webinars. i had to miss yesterday's because i had to go to my pulmonary rehab class at the time the time difference messed me up. Please continue to help us all.
Kim Fredrickson
Hi Rachel,
I just discovered I didn't reply to your comment. So sorry.You can see the webinar here https://www.youtube.com/watch?v=a8rZdkdoQ8w&t=371s I also have a lot of videos on youtube https://www.youtube.com/KimFredrickson
Barbara Gadon
Dear Kim:
I found your "Different types of portable oxygen" video on youtube. Thank you so much! I look forward to reading your other columns. I have had IPF for 8 years now, and have just been prescribed O2 for the first time - 3LTM. I have a CAIRE POC that is on-demand flow, a large home unit that is continuous flow, and an emergency tank. My doc prescribed oxygen for exertion, which I would like to include walking and maybe someday a return to my Zumba class. (Right now aquasize swimming is absolutely perfect and I don't need O2 assistance.) I am also a full-time pastor and will likely need it at some point for Sunday mornings. I'm running into real difficulty using the on-demand portable. The alarm keeps going off, so I'm not getting the benefit. I *think* I'm breathing through my nose, but I'm probably not. Are there any breathing exercises or tips you can recommend so that this can become automatic? My research into continuous flow shows considerable limitations for portable units, so it sounds like I can be most active if I can somehow master this. I'm in line for pulmonary rehab, but they are slow in getting to me. Thank you!
Barbara Gadon, St. Louis
Mich
Kim, YOU are a huge blessing !
I believe that you make Jesus smile, and I appreciate you sharing your journey !♥️
Kim Fredrickson
Thanks so much! Thanks for taking the time to encourage me :)
Kim Fredrickson
Hi Barbara, Thanks so much for your comment. I love how you are still so active and are doing necessary planning to stay active as your oxygen needs increase. It does take a while to for breathing through the nose to become automatic. It will! My column next week is about a WONDERFUL online pulmonary rehab I'm a part of. It is fantastic and you can do it at home. Honestly it is better than the formal program I've been to. Please check it out https://pulmonarywellnessonline.com/ I also have a book coming out next week on amazon that I hope will be a blessing to pulmonary fibrosis patients and their loved ones. The Kindle version is available to pre-order now, and the print version 11/15. https://www.amazon.com/dp/B07K5QP7RT
God Bless!
Paula Davis
Thank you for your tips about Y connectors and joining 2 devices. I’m going to try it with 2 concentrators. I’ve been at 10 liters for some time, and had to keep increasing the steroid.
Another tip I’d like to pass along: I love Drive’s tank regulator called SmartDose! It has a battery booster for drawing in the oxygen, so a 5 setting on the tank with SmartDose is even a little better than a 10 on my home concentrator. This way, I can do so much more, out and about. Yes, I have an Inogen G5, but it doesn’t let me walk as fast as SmartDose. I usually leave the G5 in the car, and use it for driving or riding in the car. Maybe you can pass this on...makes my life better!