Debra Anne Stafford Lowder

July 10, 1953 — March 27, 2026

Mt. Holly, NC

When you say your breathing gets worse, are you referring to shortness of breath or a decreasing oxygen saturation level?

This is one of the inconveniences of supplemental oxygen. If you require oxygen while you are showering, you might consider using a shower chair or bench. Sitting is usually less exertion than standing.

Sam…

Hi everyone, hope you had a great day today. How do you guys wash your head and your face in the shower. Ever since I started using oxygen, I tried to use the oxygen in the shower but when it’s time to wash my head and my face I have to remove the nose cannula but by the time am done my breathing would be worse. Is there a way we can do…

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An easy way to prove battery life is to pack the manual for the POC. The battery life for each setting is usually listed in the manual.

Are you an organ donor? Not everyone is an organ donor. As a member of the PF community, where a transplant may be the only viable option, the need is great.

If you are not an organ donor, can I ask why? If you are an organ donor, are you comfortable asking others whether they are registered organ donors? 

hello to the 3 musketeers above. YES i also have had traditionally back pain but nothing like recently. i started with JASCAYD, (18MG / 2 D) About 6 months ago. i had tried OFEV but my stomach just could not handle it. and YES my back pain has been intolerable. i stopped taking it since i also started w loose stomach. i have now restarted…

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I added Jascayd to my OFEV regiment two weeks ago and for the last 4 days I started having debilitating back issues. As most, I have some pre-existing back issues but none have ever hit me like this did. Getting up from a chair or from bending over the sharp pain was so bad that my knees would buckle…that was a new one for me! I am going to…

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He Sam – thanks. VA reminds me of vacs when needed. Stay well – Steve

Make sure you inform your airline that you will be bringing a POC with you, and check about their policy etc. Most airlines require that the battery will be sufficient to provide oxygen for 1 & 1/2 times the length of the flight. Translation: if the flight is going to take 8 hours, your battery must be able to last for 12 hours. Some…

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Hi, I take Jascayd and Ofev. Been on both for about 2 months. So far no side effects. Not even diarrhea or nausea. Have had no back pain at all. We never know how we will react to these drugs. Hoping the 2 together will help. Tomorrow could be entirely different. Brenda

I take all 3. You can take the OFEV and the Jascayd. Just started the Yutrepia 3 weeks ago but was using Tyvaso prior to switching. I could not tolerate the Tyvaso. It is the same medicine but a different inhaler and it is much better. I am doing well on the Yuptrpia. I take so much medicine and can’t tell if I am having another side…

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I remember having this pain that radiated down my back to my leg like sciatica early
But the pain did stop and have not had it again. Asking a new question Has anyone switched to Jascayd from Ofev or perfididone? I have definitley gone down at a faster rate with it . Has anyone else? Also taking new drug Yutrepia

I was diagnosed with sleep apnea and was put on the paper, i had inital covid then PF…I believe the two caused PF as I ran and biked months before..SPO2 is usually 92 now.

All of those are recomended by my care team, plus an annual COVID, a tetanus shot every 10 years, and a shingles vaccination. Sam…

Steve, check with your care team about the pneumonia vaccine. I am heading into my 5th transplant anniversary, and I work off a checklist that includes vaccines. The pneumococcal vaccine is listed as every five years dependent on the version you received. Sam…

Hi Charlene, I had a sleep study about 9 months ago and it was positive for sleep apnea. My score was 33 which means that I had this many episodes in 1 hour. My blood oxygen was in the 80s. Since being on CPAP therapy my episodes dropped to .5 per hour which is a significant drop. Although some nights it could be a bit higher. My blood oxygen…

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Hi Charlene – I took the RSV a couple of weeks ago after moving cross-country, and it slowed me down with aches and pains for several days. But I was already tired, and at almost 77, I’m glad I did it. So I get the flu shot yearly with no problem other than a little soreness. Pnuemonia is a one time shot (I think) with no issues, had…

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I have had them all with no issues. Thinking about getting a second Covid, had the first one in early September, just to make doubly sure I am fully protected. I take ofev 100 and 150 as well as jascayd 9 mg twice a day. I don’t choose to spend time in the hospital or even die from something preventable.

I have never had any reactions to Flu, RSV, Pneumonia or Covid. Each person may have different responses. I also take 100mgs of Ofev twice daily and have had no side effects.

I am a strong believer in Western medicine and the importance of vaccinations, especially when living with a chronic illness like IPF. I came down with pneumonia, RSV, and influenza A this year, and it nearly killed me. It also significantly damaged my lungs. I routinely get the flu shot, but I’ve never gotten the pneumonia or RSV shot,… Read more

I know that made a difference. I wish supplemental oxygen suppliers would make this a recommendation when they see the level increasing.

Sam…

Tom,

My care team described this as stair-stepping. I would show no progression, then I would drop, usually due to an event such as a cold or exposure to an irritant.

Sam…

Charlene,

I had multiple sleep studies prior to transplant. Two of the studies were conducted overnight in the hospital setting. A third study was conducted as a home sleep study. The studies showed that my breathing slowed or stopped multiple times during the night. My saturation levels would drop with my breathing. A CPAP device was…

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Thanks Charlene for your response. I will call my Pulmonary doctor and see if that is an option he will endorse. That would give me peace of mind! Thanks again

As patients living with a chronic illness like IPF, we’re used to navigating multiple medical appointments. Oftentimes, when I share with friends the number of appointments a typical clinic day is made up of, they’ll often say to me, “That must be exhausting”. I always answer with a short confirmation that it is, which is why I try to avoid… Read more

A tip that helps me stay active with IPF, especially in the harsh winter months in Canada, was buying a walking pad for my room! I’m able to just get out of bed now, transfer my oxygen source to something portable and do some walking in the comfort of my room and pjs. It was the best $200 I ever spent this year!
Char.

Hi @masonryt,

Instead of renting a POC, is it an option to have your doctor fill out a Fit to Fly form for oxygen on the plane if needed? I’ve travelled with my Respironics SimplyGo a lot on a plane and just needed paperwork to support the use of it as needed. I also required 2x the length of the flight in battery power for the POC, but once…

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I was diagnosed in January 2017 with IPF. I received a bilateral lung transplant in July 2021. I started my journey with a PCP and a dentist. Today, I have about 14 doctors, take 34 pills a day, one daily injection, and a weekly injection. You can read about my experiences in my column.

Have I seen it all? No, but I have seen a lot.… Read more

As winter clings to weather patterns here in the Mid-Atlantic region of the U.S. Spring is gaining traction. It seems that seasonal change leads to discussion on portable oxygen concentrators, longer walks, air travel, and freedom from our homes.

If you Google portable oxygen concentrators (POC), your social media feed will be filled… Read more

Thanks for your response! I suggested this to my pulmonary doctor who I follow up with after lung transplant. He is not familiar with this test and feels I don’t need this. However, he is willing to order it at my request and expense. I’m still debating if I should research it further??? Thanks

In the Chicago area there are pulmonary function labs that offer a HAST test or High Altitude Simulation Test. There is measurement of how a patient will do at high altitudes like Pike’s Peak and during plane travel. Interpretation and recommendations follow. I am waiting until spring to take my test. If such a test is available to you,…

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Hi Sean. Any update on how you’re doing since you increased your TruNiagen dosage? I’m 3 months in on the original dosage and beginning to notice some improvement in my oxygen levels. I’ve got a PFT scheduled in another month, so we’ll see.

Yomi,

I wanted to provide the settings from the Rove 6 technical manual. A setting of 6 provides a total volume per minute (ml/min) of 1260 ml per minute, which converts to 1.26 lpm. Taking 10 breaths per minute, the flow becomes 126 ml per breath, which converts to 0.125 lpm. Taking 40 breaths per minute, the flow becomes 31.5 ml per breath,…

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Hi masonryt,

Can I suggest you discuss this with your care team and ask if a HAST (High Altitude Simulation Test). You can read more about the HAST here: https://www.nationaljewish.org/conditions/tests-procedures/pulmonary-physiology/gas-exchange/high-altitude-simulation-testing-hast

Sam…

Just came back from my Pulmo and he is going to try and get me on this new drug. I had tried Ofev years ago and it triggered my pancreatitis so i had to go off

I am on 2 1/2 liters of O2 and am dealing with the constantly runny nose. The irritation and dryness from the O2 causes all sorts of issues including nose bleeds. My allergist…

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1000mg, 2×500 daily

Just update on Minimally Invasive Laminectomy. Had this procedure done on January 15, 2026 by Neurosurgeon from Philadelphia Temple Health. Laminectomy surgery was a success and doing well with no back pain now. So thankful for 3 surgeries ( 2 hip replacements and Minimally Invasive Laminectomy) since single lung transplant in 2022. God is…

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Thanks so much for your input about flying after your husband’s single lung transplant. It’s encouraging to hear he had no issues with oxygen in flight! I really appreciate you taking your time to share this with me and am hopeful this will be my experience with flying. Thanks again!