Monday, September 9, 2013

Five reasons you should use oxygen if you have pulmonary fibrosis

Your doctor told you to use oxygen for good reasons. It's a difficult transition, but smart use of oxygen is one of the most important things you can do if you have pulmonary fibrosis. Here's why you should maintain your oxygen saturation >90% 24hrs/day:

  1. You will suffer less. Oxygen saturations < 90% make most people feel short of breath.
  2. You can do more with oxygen. Using oxygen during activities will allow you to accomplish tasks that you simply can't do any other way.
  3. You can avoid pulmonary hypertension. Avoiding low oxygen levels can help prevent a serious complication of pulmonary fibrosis called pulmonary hypertension.
  4. You can improve your chances of getting a lung transplant. Lung transplant doctors want you to be strong, active, and have a healthy weight. Using oxygen allows you to be active and participate in rehabilitation, which can turn you into a better surgical candidate!
  5. You might live longer. While not proven to be the case for patients with pulmonary fibrosis, oxygen use does help people with chronic obstructive pulmonary disease (COPD) live longer. 

In an upcoming post, I will discuss some of the practical aspects of using oxygen in and out of your home. 

    23 comments :

    1. I wish you could avoid pulmonary hypertension by using O2. My husband has used O2 from diagnosis in 2007 - about a year after the PF diagnosis he was diagnosed with PH secondary to the PF. He remains stable thus far with only a small decrease in lung capacity.

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      1. Hi Cheryl,

        Thanks for your comment. Your husband's experience is not uncommon, and you are right -- using oxygen doesn't bring the risk of PH down to 0%. But, aggressive use of oxygen can help some people avoid pulmonary hypertension. I will discuss strategies for effective oxygen use in an upcoming post.

        David Lederer

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    2. I'm glad you posted this because when my father was suffering from IPF I had huge battles at home regarding oxygen use. I (along-with several actual doctors) advised my father to use supplemental O2 as much as possible. However, there were times when my mother would end up saying things like "Oh don't use too much O2 or you may get addicted to it" (aren't we all addicted to it ? :))

      Also, O2 usage is sometimes viewed as a sign of weakness. I'm happy that you've outlined all the good reasons to use O2 over here so that if anyone I encounter talks about not using O2 while suffering from low saturation levels, I can send them here.

      Managing IPF is very tough as my dad had this constant terrible cough towards the end. We tried several different medicines but nothing provided any sort of relief. (prednisone did work for a while after which it stopped working and the cough returned)

      Do you have any tips to ease the cough for IPF patients ? We tried a few different inhalers, prednisone (as prednisolone), NAC, etc.

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      1. Hi Ashray,

        Thanks for sharing this. I will discuss oxygen use in more detail as well as management of cough in upcoming posts.

        David

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    3. I would like you to discuss how important keeping the oxygen above 90 is. I will drop into the mid 80's pretty quickly walking, but recover quickly as well if I simply sit down. If I am only going to walk a short distance and can sit down again I usually don't put my oxygen on since it seems like a waste. does dropping below 90 always cause problems, or is the amount of time it is below 90 more important?

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      1. Hi Gretchen,

        This is a really important question, and I plan on addressing this in an upcoming post about how to use oxygen to your advantage. The short answer is that each time oxygen levels dip below 90%, there is strain placed on the heart. Spending a few seconds just below 90% by itself is probably not so harmful, but if it happens over and over each day it could contribute to the development of pulmonary hypertension. In addition, many people will subconsciously limit their activity level to avoid oxygen levels below 90% -- as the disease progresses, people who adhere to this strategy quickly become very limited and become weaker as their muscles waste away. Life becomes very difficult.

        I recommend that you talk to your ILD team (MD, RN, and/or physical therapist) about what might be the optimal way to use oxygen for you. Everyone is different, and finding the right treatment strategy for you requires a team approach.

        All the best.

        David

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    4. I was diagnosed with IPF nearly 6 years ago (via lung biopsy) and currently use oxygen at a rate of 4 LPM at rest/8 LPM upon exertion. 3 months ago (near the end of a Phase 2 Fibrogen (FG-3019) study where I was infused with 30 mg/kg every 3 weeks with all interim PFT tests showing some improvement)my oxygen sats started to drop and I developed a very irregular heartbeat and pronounced angina pain. R&L catheterization showed 3 primary arteries blocked (60%-90%), but the surgeon decided it was not feasible to bypass due to my advanced IPF. My pulmonologist felt the heart issue was related to an onset/increase of pulmonary hypertension. At that point, everyone sort of stopped in place and no one offered a single treatment suggestion. Pre-retirement, I was a biology professor and my wife a technical researcher...thus, on our own, after reading Ellelstyn/Campbell/Ornish converted to a plant-based, oil-free diet and I slowly resumed my normal at-home pulmonary rehab exercise schedule. I have lost 25 lbs (that had refused to budge on the Mediterranean diet we followed for years), reduced my total cholesterol from 146 to 97 (I've taken Crestor for years), eliminated the angina pain by the end of the 1st month, and have now returned to full-exercise using respiratory muscle exercises, stationary bike, treadmill, & seated yoga for 90 minutes/7 days per week. My oxygen sats have stabilized at a higher level than pre-diet and I honestly can say I feel better than I have since my diagnosis 6 years ago. My final FG-3019 tests continued to show a small improvement. Is there any anecdotal information pertaining to the impact of diet upon the oxygen related development and progression of pulmonary hypertension? We feel we've accomplished something...and the cardiologist concurs (he said, "Continue whatever it is you are doing...vigorously!"...but neither he nor we have any idea what that might be.

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      1. Thanks so much for sharing your experience. Congratulations on your weight loss and control of your cholesterol. I am not away of studies suggesting that diet impacts on pulmonary fibrosis or pulmonary hypertension, but there are reasons to think that a healthy lifestyle and maintenance of a healthy weight might improve the sensation of breathlessness for people with lung disease.

        Best of luck!

        David

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    5. Thank you so much for creating this blog! It is a great relief to have some clarification about such important issues, so that we can make informed decisions and better understand our disease. This question of supplemental oxygen has been mystifying me for quite a while. I have CHP, and I have graduated pulmonary rehab and can complete my exercise regimen at my local gym now without supplemental oxygen. Recently though, my sat's have been dropping below 90, but usually only after 10 minutes or so, or walking up an incline. So I just slow down until I recover. My pulmonologist was concerned, so I was given the walk test (this time it was 3 min slow - break - then 3 min fast) and only dropped to 90. I was happy to hear that 87 is the cut off for needing oxygen. They clarified that even though I do drop below 90, even to 83 which stops me in my tracks, that I'm not going to do any damage to myself as long as I slow down when it happens - and as you mentioned above, keep exercising to maintain my fitness. They said that people can even have levels from 80 - 85 as a result of training the body to adapt to these low levels. This would not do damage as long as the person can still keep exercising over the long run. That was quite a surprise to me. I was told that I would get warning symptoms of any impending organ damage from low oxygen over time, and at that time changes could be made. After considering this information, and reading your post, I think I understand... Of course this is different for each individual but it seems like there are two goals: 1. Keep oxygen over 90 to protect the heart and other organs, 2. Keep exercising to keep the body healthy and strong. If supplemental oxygen is needed to accomplish these things, it should be provided. I think in my case, it was determined by my clinical reporting of the lack of frequency below 90 and the results of the walk test, that I am OK to continue on my own. These decisions are different based on the medical team and the individual. I take your point and I agree that it's important to work closely with your own team of doctors for specific individual information, but I wonder about your take on this. Thank you again!
      Joan

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      1. Hi Joan,

        Thanks so much for sharing your experience. I think many people with pulmonary fibrosis have had a similar experience.

        David

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    6. Thank u Dr for this blog, and thanks for all who share their positive experience.
      But I am confused now. my mum was diagnosed with IPF 3 weeks ago, her PFT showed moderate restrictive pattern and her DLCO was on the 30th. Accordingly her pulmo advised her to use oxygen at 2 lpm 8 hours a day. I bought her an oximeter to keep an eye on her saturation, but was surprised when her reading is always 98% at rest, and only drops to 97% after 10 min walk (although her heart rate goes up to 120 ).
      does this mean that she is not in need for oxygen?
      Is there a possibility that her body is retaining Co2 although she only has restrictive lung disease?

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      1. Hi Mai,

        Thanks for your questions. It is difficult for me to comment specifically on the care of a specific individual who isn't under my direct medical care. Your questions about oxygen and carbon dioxide are excellent, though, and I suggest that you discuss your mother's oxygen levels and oxygen requirement with her pulmonologist.

        All the best,

        David Lederer

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    7. I was diagnosed with PF, due to Sclerodrema. .I am going through the evaluation process for a double lung transplant. When meeting with the surgeon/pulmonologist. He told me even with the lung transplant, I'd be dead within 3-4 years. Help?

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      1. Hi Nan,

        Everyone is unique. Some people live 15 years (or more) after a lung transplant, and others live only 1 year (or less!). Sometimes doctors can give you a sense of how risky a transplant might be for you, but other times it's not possible to predict what's going to happen. Talk some more to your doctors about whether this 3-4 time frame was an average (meaning half of people live longer than that) or if they meant that transplant was high risk for you and it was unlikely that you would survive ever 3-4 years -- those are two very different things! You can also get an opinion at other transplant centers (something I usually recommend to my own patients too).

        best of luck

        Dave Lederer

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    8. I was diagnosed with PF, due to Sclerodrema. .I am going through the evaluation process for a double lung transplant. When meeting with the surgeon/pulmonologist. He told me even with the lung transplant, I'd be dead within 3-4 years. Help?

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      1. Every people is different and every case too. Don´t panic and don´t lose faith.

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    10. Thanks Dr. Lederer for your concerns. I am a 74 year old male, diagnosed with IPF 4 years passed. Some old scans showed up damage as early as 2007. Been on Oxygen some 1 1/2 yrs. started at 2 lpm at night , now I can't go 5 mins without it. Up to 4lpm and if I walk only 50 feet with Oxygen at 4 lpm my BOL goes to low 80's and I must stop. I have became a lot worse in past 2 months , now it seems I lose each day. I have been on Esbriet for some 17 mos. My Concentrator only goes to 5 LPM and my Potable tanks go empty very quickly. My Pulmonologist only works 2-3 days per week , semi retired, not many IPF patients. I got on Esbriet @ OSU in a Clinical Study. My Insurance (medicare advantage plan) won't allow me to see a Pulmonologist that works with just IPF patients , however I have a chance to Changed before Dec. 7th . Do you think I am too late for any more help , or to enter more Trials. Thanks & GOD BLESS , Bob

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      1. Thanks for sharing your experience here. I suggest you talk to your pulmonologist about getting a 10 liter concentrator for your home. He or she can advise you about whether you should be using higher oxygen flows with exertion to prevent your oxygen levels from dropping below 90%. There are also now 40 Pulmonary Fibrosis Foundation Care Centers around the country: http://pulmonaryfibrosis.org/life-with-pf/find-medical-care. The medical team at one of these sites can probably best answer your questions about more treatment options and clinical trials.

        I wish you all the best battling PF.

        Dave Lederer

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    11. There are Portable Oxygen concentrators that go up to 9 lpm on a pulse dosage. Try talking to your DME company to see if they provide them. The E tanks make you pretty limited when it comes to traveling or simply going to the grocery store.

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    12. My mother (age 50) was diagnosed with severe left ventricle systolic dysfunction due to which she also got pulmonary edema. Doctors suggested to implant CRTD device and while undergoing surgery they had to cut near her left lung where it is already bleeding inside and due to this cut the left lung collapsed. She had severe bleeding there and doctor placed drain and closed the cut. After 2weeks with approx 1500ml of drained fluid and blood they removed the drain. A week later the problem turned into pulmonary fibrosis. I have heard that there is no known treatment for fibrosis. The pulmonologist says that it cures with time. And she had an additional problem of asthama from her childhood (age 16). Am thankful to know more about the problem and whether it can be cured..

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      1. Hi there. Thanks for reaching out to me. As you might imagine, I can't help make a diagnosis for your mother online. I suggest searching for a medical center with expertise in PF at http://pulmonaryfibrosis.org/life-with-pf/find-medical-care. hopefully there are doctors that can make a certain diagnosis and make treatment recommendations. best wishes to your mother.

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