Thursday, October 3, 2013

The Sixth Sense: Why you should use oxygen if you have Pulmonary Fibrosis!

Hi everyone!

I’m just completely blown away the overwhelming response to my blog. I’ve received comments, emails, and a few in-person thank yous. I’m pleased that you are finding the site useful. Please keep sending me your ideas for future blog posts.

Right now I’m flying at 30,000 feet on my way to Denver, Colorado for a meeting about Pulmonary Fibrosis. I’m a lung doctor, so I’m always thinking about how lungs are working (or not working), and right now I’m wondering if I’m harming myself by spending a few hours at altitude.

As you might know, the air is “thinner” at higher altitudes, which means there is simply less air to breathe. Now, I’m not breathing “30,000 feet” worth of thin air – which would be really bad. Instead, since the air in the cabin of this Boeing 757 is pressured a bit, I’m breathing about “8,000 feet” worth of thin air. For someone with normal healthy lungs breathing comfortably at sea level, about 99% of the hemoglobin in the blood leaving the heart might be carrying oxygen -- that’s a normal healthy percentage. But with the thin air up at 8,000 feet, only about 90% of the hemoglobin is carrying oxygen.

Should I be worried?

Maybe. I’ll explain why…
The lung is pretty amazing organ. I run the pulmonary course for the medical students at Columbia University, and each year I have the pleasure of teaching the students how the lung moves oxygen from the inside of each of the lung’s air sacs into the blood that is rushing through blood vessels in the lung. This might sound simple, but there’s a serious problem that the lung has to take care of if it’s going to maintain normal oxygen levels in the blood.

I guess an economist might call it a “supply and demand” problem. You have millions of tiny air sacs in your lung, and each one has to transfer oxygen into the bloodstream. Each of your air sacs are a different size – big ones get lots of oxygen each with breath, and little ones get a small amount of oxygen with each breath. In addition, each air sac has blood flowing right past it – this is the blood that picks up oxygen from the air sac to bring it to the rest of the body.  Some air sacs receive lots of blood flow and some air sacs receive just a little bit.

Now here’s the problem –- the size of the air sac doesn’t match up with the amount of blood flowing past it. So, you have a bunch of big air sacs with a small amount of blood flowing by – causing a backup of oxygen in the air sac. Without enough blood flowing by, the oxygen has no where to go and it stays in the air sac – these air sacs only transfer a small amount of oxygen to the bloodstream.

You also have small air sacs with way too much blood flowing past them – here the bloodstream will drain all of the oxygen out of the air sac, leaving an air sac that contains very little oxygen. These air sacs also only transfer a small amount of oxygen to the bloodstream.

Both of these situations – too big and too small – make the lung inefficient at doing it’s most important job – transferring oxygen into your bloodstream. Fortunately, your lung has two solutions – one is kind of obvious and one is way cool.

The obvious solution is that there are, of course, many air sacs where the amount of oxygen coming into the air sac matches up pretty well with the amount of blood flowing past the air sac. In fact, we often try to measure how well the oxygen coming in matches up with the blood flowing past the air sacs in people with lung disease – it’s a sign of how healthy (or sick) your lungs are. (It’s one of the reasons we do “arterial blood gases” or ABGs).

The way cool solution is that your lung can actually sense oxygen in the air sac – kind of a “sixth sense.” Remember the “too small” air sac? There was too much blood flowing past it and the blood ended up draining all of the oxygen from the air sac. Well, to prevent the oxygen level in the lung from going too low, the lung first senses the low oxygen levels inside the air sac and then actually redirects the bloodstream away from that air sac so that the blood can instead flow to bigger air sacs. That means that the oxygen level inside the small air sac will rise back toward the normal range (because the blood is no longer rushing past it so quickly and draining all the oxygen from it).

Now this part is really important (and it’s going to come up again in a minute): the way that the lung redirects blood away from the “too small” air sac is by simply making those blood vessel that deliver blood to the air sac shrink up a bit. When blood vessels shrink up, it is harder for blood to get through those tiny little blood vessels, and instead the blood will flow into other blood vessels that are not shrunken up – and which are therefore going to deliver blood to bigger (and perhaps healthier) air sacs with normal oxygen levels.

So, every day, everyone’s lungs are “working hard” trying to match up the amount of oxygen in each air sac with the amount of blood flowing past each air sac – and you have millions of air sacs. If the lung stopped trying to match up oxygen and blood flow, a “normal” oxygen level would be about 60% instead of 99%. It’s that important.

I’m up here at “8,000 feet” worth of thin air, but with pretty healthy lungs.  So, now that you are “lung smart”, can you guess what my lungs are “sensing”? That’s right – they are sensing low oxygen levels inside of ALL of my air sacs. And that means that my lungs have told my blood vessels -- ALL of my blood vessels –-  to shrink up in the hopes of sending blood to “healthier” air sacs.

But there are no “healthier” air sacs for the blood to go. Instead, my heart now has to pump harder just to push the blood through all of these really narrow blood vessels. I have a pretty healthy heart and the flight is only about 4 hours, so it’s no big deal for my heart to work harder and generate a higher pressure in order to push my blood through the narrowed blood vessels in my lungs.

Now imagine if it wasn’t 4 hours. Imagine my heart had to do all of that work all the time. My heart might not be so happy. It might eventually get weak.

Now stop imagining. Instead, think about what happens to you each day. Maybe you always have low oxygen levels, in which case you are putting strain on your heart 24 hours a day. Or maybe your oxygen levels only drop when you exert yourself – meaning that you are living in a cycle of heart strain dozens of times each day. Or maybe your oxygen levels drop at night. You would need a sleep test at home or in a sleep lab to figure that out.

Over time, those low oxygen levels eventually leave your blood vessels permanently diseased and narrowed. That condition is called “Pulmonary Hypertension”, which is a serious and life-threatening complication of Pulmonary Fibrosis. (Pulmonary Hypertension can also exist without Pulmonary Fibrosis).

Using oxygen to keep your oxygen levels over 90% 24 hours/day (90% 24/7) is one of the most important things you can do to keep yourself healthy if you have Pulmonary Fibrosis. Yes, it is inconvenient, frustrating, annoying, expensive (for some), and for many it is a difficult and embarrassing transition.

I want to acknowledge and address the embarrassment that many people with Pulmonary Fibrosis experience when first wearing oxygen in public or with friends and family. First, I do understand. I personally would have a very difficult time putting on a nasal cannula and walking around town or the hospital with an oxygen tank. The transition is hard. But remember these 4 things:

  • Using oxygen is NOT a sign of sickness. 
  • With oxygen, you are healthier, not sicker.
  • Using oxygen is NO DIFFERENT than wearing eyeglasses or using a cane.
  • Some accomplishments are judged not by what you achieve, but by what you overcome.

Thanks for reading the whole post! In a future (and shorter!) post, I will describe what I believe to be smart and helpful ways to use oxygen in your everyday life.

Please share your thoughts about this post as well as your own experiences with oxygen use.

Thanks!
David Lederer




63 comments :

  1. I am so glad you are addressing this sensitive but very important issue. I personally feel that the oxygen therapy has helped me to maintain my health and quality of life. Yes, I've had adjustments to my life but as with my eyeglasses, it's a love/hate relationship but the love side far, far outweighs the hate because the benefits are SO HUGE!

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    1. Thanks for sharing your experience with oxygen. I hope others can learn from your experience!

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    2. My mom just got put on oxygen and she seems to be breathing harder now every time she tries to walk into another room. So she just stays in bed,. I don't think this is right. I thought that the oxygen would help her feel better

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    3. My mom just got put on oxygen and she seems to be breathing harder now every time she tries to walk into another room. So she just stays in bed,. I don't think this is right. I thought that the oxygen would help her feel better

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  2. what a brilliant article. I am a patient with IPF and I was diagnosed in 2006 - 7 years ago. I suspect I had it before that but my symptoms were a cough and cold that didn't seem to want to go away. I was often more breathless than my peers but I thought that just indicated that I was less fit than them. Initially I didn't have oxygen but when I went up hills I got breathless. I didn't know anybody else with IPF at that time so I just put up with it. In 2009 I met up with people on the internet who had various forms of Pulmonary Fibrosis and they persuaded me that I should think about Oxygen. But when I saw various consultants they said I was stable and not to bother. At that time I was still capable of walking in the Alps at heights around 8,000 feet so I didn't think anything about it. But I am also a ballroom dancer and I noticed that I was getting more breathless than my peers, including one friend who had heart problems. So I asked about Oxygen at my next check up. By then I had bought my own oximeter and had seen that on occasions my sats were dropping, even as low as 72 on one occasion. The consultant immediately prescribed Oxygen 2 lpm for exercise and I started learning to live with Oxygen. Since then I have also been told that I have ischaemic heart disease and Polycythaemia. All reasons why I might have problems with blood flow and oxygen levels. I used a portable oxygen concentrator on a walking holiday in the Alps and found that my sats declined even when I was waling downhill at around 7,000 feet. So we have stopped going to the Alps. But to cap it all, I was asked to do an oxygen assessment last year and they told me I didn't need oxygen. But that was based on the results of a 6 minute walk test which shows that walking on the flat at sea-level indoors my sats don't drop. So what good is that as a test?
    Like Barbara I feel that oxygen has helped me to maintain my health and quality of life. I personally would like it if all patients were encouraged to use oxygen for exercise. It really does help.

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  3. Dr. Lederer
    Thank you so much for this blog! Don't be blown away by the responses we are spreading the word on the support websites that you are 'here'.

    Thanks for the information about Oxygen. I am still at the new acceptance stage of IPF and the thought of nose cannula while I'm at work is very bothersome to me (It is not like wearing glasses and the glasses with cannula's built in are very ugly have you seen them)? . I know the time will come and I'm trying to accept that. With the help of the patients like me and inspire websites for support and knowledge from here I'm getting better at that acceptance stage.
    I start Pulmonary Rehab next week and I have shared your website link with the nurse at Rehab.
    Thanks again for taking the time to post for us all who have this not as rare as people think disease
    Laura

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    1. My PF doctor only had to tell me if I didn't wear my oxygen I could end up with dementia for one thing.....that scared me. My mom had dementia - I didn't want it! People have only been kind to me with my 02. WEAR IT

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    2. Hi Laura. Pulmonary rehab will be a great experience for you. It is likely that your pulmonary rehab therapist will ask you to use oxygen during some of the exercises at rehab -- you will learn first hand how important oxygen is. It's a very hard transition, and no one expects you to make that transition in a single day. Keep at it. Good luck with rehab.

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    3. Laura,
      For 8 years I had a Trans Tracheal system for my oxygen. A very small hole was made in my neck and I used disposable trachea tubes daily. A lung DR. took care of this and I would wear a scarf turtle neck top.
      Mary E.

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  4. I've been diagnosed with BOS, Bronchial Obstructed Syndrome. Can you talk about this?
    I also had a left lung tx Nov 2011. My lung is in rejection.

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    1. I am sorry to hear about the problem with your transplanted lung. There are a number of different kinds of rejection, and I do intend to discuss lung transplantation in future posts. I hope everything turns out okay for you.

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  5. Thank you for stating those fantastic reasons for wearing oxygen. I dont have IPF, I have LAM. I would like to share this on our LAM facebook page. I have been using oxygen for years now, but I remember not wanting to take that step.

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    1. Hi Kathleen. Thanks for sharing your experience and thanks for sharing my blog on your LAM facebook page. Best of luck with everything.

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  6. Wondering why trans-tracheal O2 isn't used more? As a patient with lymphangioleiomyomatosis I think I would be more effective at my work as an oncology nurse without the cannula. I travel to Europe and Central America with oxygen. Posting as anonymous as I have no other address with which to comment.

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    1. Good question! I am going to discuss oxygen delivery systems in a future post.

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    2. I've been watching the PFF videos from last year's (2012) Awareness Day from Denver (http://pulmonaryfibrosis.org/webinars/GPFAD2012). Unfortunately Dr Tristan Huie's video is less than a minute so we miss his talk but afterwards in the Panel/Open Forum video they discuss that transtracheal oxygen was discussed in Dr Huie's Living Better with PF video and they expound upon the subject a bit in the Panel discussion.

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  7. Thank you for creating this site. I find it very informative and look forward to reading all the stories. I understand what you're saying about using the oxygen and absolutely believe all you say about it. But I'm so uncomfortable using it infront of anyone even my children. I'm sure I'm not alone feeling like this and at some point will get over it. Thanks to all who comment

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    1. I completely understand, and you are right -- you are NOT alone. Go back and read those four bullets at the end of my post -- remember that using oxygen is not a sign of sickness. It is a sign that you are trying to be as healthy as possible. If others are uncomfortable around you when you use oxygen, go ahead and reassure them with a big smile and tell them that your disease is not contagious, that oxygen is not dangerous to them, and that it's okay to talk about your lung disease and your oxygen use. We need to re-educate the entire world about oxygen. No one should judge you based on your use of a medically necessary treatment. There is no shame in using a treatment that is helping you to function and live your life. The shame belongs to those who judge you based only on their ignorance. You can start teaching your loved ones right now. You can use this blog (and this response) as a start. Good luck with this, and please let me know how it goes.

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    2. Hi thankyou for your blog, it really does help people like us,
      One thing I did wonder is I have scleroderma as well as PAH. and am told a lung transplant is not advisable because of the asophagus,How do you feel on that situation, I live in New Zealand, and often wondered if taking an overseas trial would help. thank you again.

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    3. Hi mel. That's a big question. The short answer is that there are centers in the United States that perform lung transplantation for PAH related to scleroderma. The problems with the esophagus play a major role in deciding if patients with scleroderma can safely undergo lung transplantation or not -- and most patients with PAH related to scleroderma will not be offered lung transplantation because of problems with their esophagus (or because of other medical issues). It may be worth it to have your doctors send your records to lung transplant programs in the U.S. -- perhaps West Coast programs such as UCSF, Stanford, UCLA, and others -- before making the trip. Best of luck!

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  8. Great blog, great article.
    Can you include Facebook profiles as part of the comment selection?
    Thanxs Melbourne Australia

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  9. Superb article, thank you so much!
    The scientist in me really enjoyed this, but it is also an issue that I will need to face with my Mum and Dad (he has IPF/interstitial lung disease) and it has clarified things enormously. I feel like I can enter into this next phase much better prepared to help them, and myself, so thank you.
    Vicky

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    1. Hi Vicky. I am sorry to hear about your father's IPF. Very gratifying that I could help you in this way. All the best.

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  10. Interesting article and seems to make sense. Here is my question. My son is a pilot and flying international is an 8 hour flight. That's 8 hrs., daily. What is happening to his heart and lung?

    One more comment. My husband was dx. w/PF 5 yrs ago and prognosis was 2 yrs. Not knowing he had PF, we had climbed Mt. Sinai the year before his diagnosis. Initially, following his diagnosis he used O2, 24/7 but the nosebleeds presented another difficulty and he suffered fatigue. Eventually he reduced his O2 to activity only, meaning while using the treadmill. He checks his O2 levels several x/day depending on activity and is almost always between 90-100. He feels stronger and is more active, playing baseball w/grandkids. My question: Can the body become dependent on supplemental O2?

    Thank you for starting this blog. I am very grateful.

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    1. Great questions. First, let me reassure you that a person with normal lungs is not in danger of developing heart problems from low oxygen levels during airflight. For people with normal lungs, the heart and lungs adapt quite easily to the lower oxygen levels (in the way I described in my blog). The heart and lungs both adapt remarkably well to even daily events like piloting a commercial airliner on a regular basis. It is only when the lungs are diseased that the strain placed on the heart becomes dangerous.

      I am very happy to hear that your husband is doing well with PF. I don't have a simple answer for you about whether the body becomes dependent on supplemental O2, but this is something I will discuss in a blog post in the future because it is just so important that everyone use oxygen when they need it, and your excellent question comes up very commonly.

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  11. One of the side effects of oxygen therapy is morning headaches. What is the reasons for this? Too much oxygen or not enough? or it just is what it is?

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  12. I am very late to this discussion...in fact I was in the hospital getting a VATS when you published the blog. I use o2 for exercise but here's a logistical question. I am an avid sculler, and I have rigged up a slick way to keep a o2 tank aboard to use while I row. But getting my shell to and from the water, on and off my truck, etc will leave my stats in the mid to high 80's but only for a few minutes at a time. Should I add o2 (will require the portable concentrator) or not worry about such a short time. Thanks in advance for your answer.

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    1. Hi David. Thanks for your question.

      First of all, I am super impressed to hear that you are sculling with oxygen. How wonderful! Do you know what your oxygen sat is right after sculling? Are you able to maintain sats over 90%?

      To answer your question, my opinion is that your should aim to keep your sat over 90% all the time -- particularly while exerting yourself. So, yes I think you should consider using oxygen to keep your sat over 90% during those activities.

      As an aside, if you haven't done so already, consider touching base with the folks at the PFF (pulmonaryfibrosis.org) -- they LOVE to hear about people with PF who have unique interests. They would love to see a picture of you sculling. Just a thought.

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    2. Thanks! Yes I will use the portable concentrator when I do the moderately heavy work of launching my scull. I will see about getting a pic of me in the shell, or at least a picture of the rig. My o2 sat is right around 90 - 92 at the conclusion of a 4k row. And yes I am super impressed with my team at Yale. Now we are in Florida (partly so I can scull in the winter) but am keeping in touch with them. A local primary care doc has arranged for me to have PFT's every 3 or 4 months while we are here. Your blog is a wonderful resource!

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  13. Thanks Doc, Your article is very informative. I use oxygen while i am home and during drive. I am not a shy or hesitant person. I use nasal cannula and walking around town without considering that other ppl are looking and stairing at me. My IPF was detected in 2010 and things are geting bad with every passing day but i am not lossing hopes....

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    1. I'm sorry to hear that things are worse each day. I am thrilled to hear that you are proud to use your oxygen. You are helping to make oxygen use "normal" in other people's eyes. Thank you!!

      David

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  14. My wife asked me one day "did I notice how many people stare at me when we are in the mall & I am using an portable oxygen concentrator with a nasal cannula?" My answer was "not often but when I do I smile at them" no one has ever come to ask me why I am using oxygen, I think a lot of people think it is because of smoking (because of the publicity for anti-smoking) I often think of getting a small card printed which would explain that my condition is not due to smoking but was/is caused by my service in the Navy.

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    1. Thanks for sharing your experience, Chris. It is difficult for some people to being using oxygen in public. Congratulations for making the transition -- sounds like you are now comfortable using oxygen in public. I hope your experience encourages others to use their oxygen.

      David

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  15. Dr. Lederer, my name is Betty and II am a relatively new respiratory therapist. I've been practicing for slightly over a year now, and I still have sooooooooo much to learn!! In addition, I have a brother who has IPF and has been going through the process of being evaluated for the lung transplant list. I just wanted to let you know that as a respiratory care practitioner, your blog has been such an education!!! Your explanations are presented in such a way, that I now have the tools to discuss these things with my patients in terms they can understand.

    It also has helped me understand further, the disease process and transplantation in IPF.

    Thank you

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    1. Hi Betty. Sorry for the delayed response. Thank you so much for your comments. I wish your brother the best of luck with his transplant evaluation. Very happy you found my blog helpful.

      Dave Lederer

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  16. I so wish my mom understood why i use o2, she says the o2 is doing all the work and it isn't helping my lungs at all. Whenever I show or say anything about why i need it, she calls me a hypochondriac.

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  17. My mom was diagnosed with IPF in December of 2013. It was a devastating diagnosis. We had never heard of IPF or even knew what was ahead...until I started looking on the internet. Ugh. Recently, she was diagnosed with secondary pulmonary hypertension. She huffs & puffs so much when she walks or showers or tries any kind of activity. She just signed up for Pulmonary Rehab at our local hospital. My hope is that it helps train her to breathe thru her nose~she has always been a mouth breather. She is on oxygen...that was hard to convince her to wear it when she is out and about. Initially she was prescribed 2 liters. With the rehab, the nurse said to turn it up when she exerts herself, but mom is stubborn and feels that is too dependent on it. For many months, she put away her ox meter because she did not want to know how low it drops. When I approached her on this, she would always get defensive and mad and clam up. With the enrollment of this rehab class, she has brought her ox meter back out and has been shocked to see her sats drop to 70's when she does any kind of movement. She recently tried Sildenafil for 4 weeks without any improvement. Just today, the Dr. took her off of it. She will see him in 2 weeks and we will discuss any other meds. We have a family trip planned to Disney World in May...we made the plans back when she was not huffing & puffing. She purchased the Inogen One G3 and that is approved for flying~she has no problem with her oxygen level when sitting...it is usually 98. My concern is her tiredness...she is so fatigued with showering, washing her hair, getting up and going in the morning. Do you have any remedies to help her with her tiredness? She does not like to do anything now because she huffs and puffs. I know that she needs to move & do something daily to keep the oxygen going in her muscles, but I can not convince her of this. I am frustrated and would love any advice from someone. She is diabetic, on Coumadin for a heart valve replacement, allergic to nuts fish & chocolate (anaphylactic shock), her sodium level is 134 and many times, her electrolytes are low. Her current medical Dr simply told her to not drink so much water. I don't have faith in him at all. I once went to an appointment with her just to be a second pair of ears (mom's short term memory has been effected by the lack of oxygen), and when this Dr came in the room, he immediately asked me who I was and why I thought my mom needed someone else in the room....but my mom simply loves this jerk. I am looking for advice on how we can get her more energy and not be so tired. Any suggestions would be appreciated.

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    1. Hi. Very sorry for the delayed response. I can feel your frustration with your mother's condition. I can't give you specific medical advice through my blog, but I will try to help. The first step should be to bring your mother to see a doctor who specializes in the care of patients with pulmonary fibrosis. You can find a list of centers in the Unite States here: http://pulmonaryfibrosis.org/medicalcenters/unitedstates. There is a list of International centers on the pulmonaryfibrosis.org website as well. Please also read all of the entries on my blog for more information about oxygen, exercise, and lung transplantation. I wish you and your mother the best of luck battling this condition.

      Dave Lederer

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  18. Dr. Lederer, So pretty awesome article. I learned so much from you.

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  19. Thank you very much ....I was diagnosed in Sep.2013 with NSIP with fibrosis.....I huff and puff a lot ....my oxygen level sometimes at 93 but most of the time 85 and if I try to do something it drops below 80....I also have a heart condition called artherosclerosis ..I have a stent ...lad(widowmaker)was blocked at 8 8%and had severe angina......after reading your article I think I should consider using oxygen although for me using it was the end of the road but now I believe it might give me a future...so thanks very much.

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  20. Thank you Dr. Lederer. I also appreciate the information you've shared on this blog. I have been diagnosed with bilateral ILD and am on supplemental oxygen for exertion. My lungs were injured by a chemotherapy drug called Taxotere/Docetaxel. After three treatments of the drug for breast cancer, I was admitted to the hospital with 76% O2 saturation levels and immediately put on 15L of Oxygen and then ran through a battery of tests (CTs, Bronchial washings - lung collapsed from that, xrays etc.). Then I was put on Prednisone for just over 7 months. My oxygen saturation is fine at rest 94/95 but as soon as I move, especially if I have to climb stairs or walk uphill they drop to 88 and my heart rate skyrockets to well over 140bpm. My PFT's are showing nearly normal after a 5 year battle, although my diffusion rates stays low at around 67%. I question the accuracy of the PFT's as the walk test is done in a hospital hallway. Even the breathing portion of it doesn't seem all that difficult as you are sitting while doing the test and sitting is most comfortable for my lungs. A recent CT scan stated "Fibro-atelectactic changes moderate to severe severity with a bronchovascular distribution centrally and with predominance in the upper lobes... there appears to be some volume loss." According to the Respirologist I see I was told my PFT shows that I am "near normal" so why am I still suffering such shortness of breath on exertion? I cannot swim, do stairs, lift anything heavy or carry anything for even a short period of time and still require supplemental oxygen. Any thoughts on this?

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    1. Thanks for sharing your story. There are a number of possible explanations. One possibility is that some people may have PFTs in the "normal" range yet they may not be normal for that individual. For example, perhaps your diffusion was 120% before chemotherapy (no way to know this unless you were tested before chemo). If this were the case, then 67% actually seems like a big drop. There are other possible explanations as well that your doctor can discuss with you depending on the details of your medical condition. I am sorry that I can't be more specific here -- I would need to see you in my office and go through a full evaluation to give you the answers you are looking for. I recommend that you discuss your condition with your pulmonologist or with a pulmonologist at an ILD center. You can find a list of ILD centers at http://www.pulmonaryfibrosis.org/life-with-pf/find-medical-care). All the best!

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  21. Dr. Lederer, My husband has PF, emphysema, and bronchiectasis and was recently told he has pulmonary hypertension. He was told by a new respiratory therapist yesterday that he should not have his lpm so high when at rest. He usually sets it at 6 at rest and 10 when moving about. She wants it at 3 lpm at rest. She also said he should keep his O2 sats between 88- 92 and not to get it higher. She said over that, he was probably retaining too much CO2. I just find it hard to believe. At rest he could sometimes get to 94 or 95, but he can't walk across the room without his sats plummeting. What is your opinion on this?

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    1. Thanks for bringing this up. This is a common situation. Here's why his respiratory therapist is counseling him to use less oxygen:

      People who walk around all day with high carbon dioxide levels in the blood can be overly sensitive to the amount of oxygen they are given. These oxygen sensitive individuals can develop dangerously high carbon dioxide levels if they breathe in too much oxygen. This sudden increase in carbon dioxide levels can even be fatal in some cases.

      Who walks around with high carbon dioxide levels all day? Many people with chronic obstructive pulmonary disease (COPD, emphysema, chronic bronchitis) and many people with bronchiectasis (such as those with cystic fibrosis) often have high carbon dioxide levels. It turns out the most people with pulmonary fibrosis do not have this problem. Most (but not all) people with PF have normal to low carbon dioxide levels.

      Your husband's doctor can help figure out if your husband is at risk for this problem. An arterial blood gas test is the standard test to check carbon dioxide levels, although we can often use routine blood work (an elevated bicarbonate level in the blood) to give us a clue about how high or low the carbon dioxide level runs.

      Your husband has both emphysema and PF, so he should speak with his doctor to find out how much oxygen he should use with exercise.

      Bottom line:
      1. People with high carbon dioxide levels need to avoid high oxygen levels in their blood. A goal oxygen saturation might be 88-92% depending on each person's specific medical condition

      2. People with normal or low carbon dioxide levels (which includes most people with PF) should use as much oxygen as possible to help maintain their oxygen levels over 90%.

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  22. I have two questions. 1.) My pulmonary therapist, measures my O2 level at my ear lobe, during exertion, because when it reads in the 70's on my finger, it will read 94-ish on my ear lobe. He says that as long as the brain is getting the O2, that's what is important. I will go on the bicycle or thread mill for thirty minutes non-stop. The total therapy lasts about two hours a day/visit. It does not sound like he is correct? Is he?
    and 2.) I believe I that my recently DX'ed PH has only developed in the last 8-9 months. That is when I slowly started requiring more and more oxygen for the same distance and getting really SOB. I have been one to allow my O2 to drop below 90 several times a day even while on oxygen because I have not gone to a 10 lpm home concentrator. My POC only puts out 3 lpm, but I have begun using a oxymizer on the tank that goes to 4 lpm. I just received a valve that goes to 15 lpm. I plan to see what my stats do with that. My question, is it possible, if I begin to keep my stats above 90 almost all the time, that my PH symptoms might improve, I ask this because of all that I've read in the previous posts and other places regarding the transference of oxygen to the blood, etc.

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    1. Hi and thanks for your questions.

      First, the most important factor when measuring your O2 level with a pulse oximeter is to make sure that the reading is "real" -- that is, it is important to make sure that the number you are looking at is what your actual oxygen level is. If you are getting a 70 on your finger and a 94 on your earlobe, they cannot both be correct (unless you have an unusual medical condition called a "shunt"). Either the finger is real, the earlobe is real, or they are both wrong. Talk to your physical therapist and your pulmonologist about this to figure out how you should proceed -- someone needs to look at the quality of the reading and figure out which one is real.

      Yes, using supplemental oxygen to maintain O2 levels over 90% can help prevent some of the symptoms related to PH.

      As an aside, some people with PF and PH combined with difficulty in reading O2 levels on the fingers have a medical problem called scleroderma. Consider talking to your doctor to see if you might have this condition.

      All the best

      Dave Lederer

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    2. Dr. Lederer, Thank you for your comments. I will follow up on the 1st suggestion. I would request a clarification on the second. My question is if I began to keep my O2 above 90% most all the time (which I have not done a good job of,) might it "improve" my pulmonary hypertension, not just prevent it, as I already have it, apparently severely (but only for short period of time, less than an year if symptoms count for anything.)

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    3. In some cases, mild pulmonary hypertension is due entirely to low oxygen levels. The use of oxygen can help to reverse this kind of pulmonary hypertension. However, in most cases of pulmonary hypertension (including moderate-to-severe pulmonary hypertension), regular use of oxygen is unlikely to result in a dramatic improvement in pulmonary hypertension. There are still good reasons to use oxygen in the setting of pulmonary hypertension, however --- regular use of oxygen can help prevent shortness of breath during exertion, can improve your ability to lead an active lifestyle, and in some cases oxygen use might slow down progression of pulmonary hypertension.

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    4. Dr. Lederer, MD, it really means a lot to me for you to respond and respond promptly. I want to thank you and the others like you that are doing this for us so much. I could not figure out how to sign in when I posted, but my name is Daniel (c039859 on inspire.com,) 57, in severe ILD (immeasurable DLCO and 25% FVC, dropped severely in two years. FYI, I went to UTSW in Dallas in August) but trying to find ways to keep me going and give me some life until a possible lung transplant. If anything, this kind of interaction with you gives some of us a little more hope, maybe just enough to get us through the next stage or until something comes along to slow or stop progression. Again, Thank You and GOD BLESS!

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  23. Dr Lederer,
    I'm just finding your page. My grandmother is 77 years old. She's been treated for PF (most likely due to raising birds for 20 plus years) for 25 years or so. I'm a cardiac ICU & Cath lab nurse and can never get the exact translation as to what is happening at her doc appts. She has been recently feeling short of breath, coughing more and fatigued. She went to the hospital and was dx with bronchitis. I'm just not understanding how they would dx bronchitis in a chronic PF patient. I understand restrictive vs obstructive dz. but could this just be an exacerbation of PF?
    I've asked her about returning to prednisone. In the past, probably 12 years ago I remember she was on steroids for PF but gained about 100 pounds! So she's refusing to go back on it.
    She has cpap at night.
    She does go to a pulmonogist in whittier, ca but says that the doctor has never used the words "pulmonary fibrosis" to her, just using the words scarring, scar tissue. She was discharged from the hosptial not on O2 but was treating her self at home by confining herself to her chair and inky getting up to the restroom, when she'd return to her chair she would puff on her cpap. Comical.
    Anyway, she just went to primary care, which in my opinion is overly aggressive in any tx of her. Theychecked her sat at resting 80%, mobile in the 40s. So they prescribed her O2, they said she can not travel and can not go to my cousins wedding in April in Denver due to high altitude.
    I understand the effect of high altitude on oxygen levels (living in Albuquerque) but would she be able to go in the future...say, April, because of better management of her bronchitis? If that's what she had? Or is this just a sudden progression of PF?
    Thanks in advance.

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  24. Hi Cassidy. I am sorry to hear about everything your grandmother is going through. Your questions are excellent! And I wish I could give you specific answers to them -- but i cannot since I don't have all of the details about your grandmother's medical condition and since I am not her doctor. I do, however, know that UCLA has a PFF Care Center. It might be worth making a visit for a consultation with one of the lung doctors there. You can search of PFF Care Centers in California at http://www.pulmonaryfibrosis.org/life-with-pf/find-medical-care. I wish you and your grandmother all the best.

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    2. Thanks. I hate not living closer to do that kind of thing. I've learned a lot from your blog though. Thank you for your reply and research.

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  25. Thank you so much for what you explained, especially your notes about the embarassment of wearing oxygen equipment. I am currently suffering from pulse ox's as low as 67 if I walk a few steps. I have asthma, but I am going for a CT scan tomorrow to check for methotrexate induced pneumonitis. It is so hard to breathe, I hope I don't have permanent scarring, however, if I end up needing home O2, your words of encouragement regarding not being embarassed using O2 in front of family etc, will be something I will always remember. Thank you for that, I really mean it. If I don't end up on O2 now, I know I will soon enough due to a multitude of health conditions, so your kind words will stay with me. I've even copied and pasted that section in my notes so I can refer back to them! Great job with your blog, learned a lot and I look forward to reading more of what you have to say! Thanks.

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    1. Thank you for sharing and for your kind words!

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  26. Well, it sure is nice to find a place after all these years that I can relate to. I have pf also. They performed surgery at the CLEVE clinic on me to figure out what I had. And it for sure is pf. They think related to cockatiel that I had. So now I have a dauchound. Ive been on ox 2-3ltres when active and sleep.
    I had my own Barber Shop and once they saw the ox I lost my business. People run from something they don't understand. I had no choice but to close. It broke my heart.
    But I'm over it now.
    I lost my daughter to asthma 71/2 yrs ago. She was only 35.
    No insurance and severe case of asthma.
    She never knew I was ill either, we were estranged.
    So, now I can come here and vent. Oh by the way, my family doesn't even pick up the phone to call me. Illness and aging is a lonely place to be so I have to make the best of it, what goes on between my ears.
    Know what I mean?!?!?!"

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    1. Hi Maggie. Thank you for sharing your story. It sounds like you've been through a lot -- losing your daughter, losing your business, and now dealing with PF. Are you part of a PF Support Group? You can search for one here: http://pulmonaryfibrosis.org/life-with-pf/support-groups. You can also reach out to the PFF's Patient Communication Center for information and help; 844.Talk.PFF or pcc@pulmonaryfibrosis.org

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  27. I 'reckon' that I have COPD? At least my Pulmonologist says so. Lately I have had no symptoms of the disease at all (no exacerbations, coughing, phlegm, etc.)
    It all began back in 2009 when I experienced, what I now know to have been, a COPD exacerbation. The EMT's took me to the local E.R. where I was told that I had a heart attack. This was on Friday evening. They scheduled me for an angioplasty for Monday morning. (musta not been too 'critical', huh?) Anyway, Monday arrived and the procedure was done, and I woke up to discover that they had placed a drug eluding stent as well. Their explanation for doing so was because my Troponin Levels were elevated in the E.R. Later on when I did a follow up with a Cardiologist, he told me that the blockage was only 70% and most likely 'should have been' treated with medication(s) and life-style changes. He also said that a severe COPD exacerbation can also elevate Troponin Levels just like a heart attack. Anyway, I have a Stent and that can’t be removed!
    After this, I saw a Pulmonologist for the first time. He put me on Symbicort which I have now been using ever since (although NOT regularly!). I read on the drug company’s website that Symbicort improves breathing within minutes! My experience is that I notice ‘nothing different’ before OR after I use Symbicort. About a year ago, the Pullmonologist also wanted me to try Spriva. I ‘tired’, but I experienced extreme hoarseness and loss of voice. It got SO bad that I stopped Spriva “on my own” and advised the doctor that I did so. It took about two months before my voice returned to normal. (It was mostly the higher ranges of my voice that disappeared, as low range voice was about normal.)
    Last October me and my partner of 46 years took our first trip to NY City. While there I began to experience shortness of breath and had difficulty walking the stairs at the subways and walking long distances. When we returned home I was so weak that it scared me and I went to the E.R. where they discovered that I had pneumonia. I was treated with antibiotics, of course, and on oxygen as my levels were too low. In fact, my oxygen levels would not stay above 90% without supplemental oxygen. I was prescribed Oxygen for home use as well. It has been almost a year now and my oxygen levels are so much better. When at home and simply moving from room to room or sitting watching TV or even cooking, etc., the levels remain above 90. When I go outside and exert myself with a bit of work, they will drop below 90, so I strap on my portable oxygen. But, when I sit for a minute they bounce back to 95%! I have an oximeter and check my levels quite often.
    I advised my Pulmonologist about this yesterday, but he still insists that I use my oxygen ‘at all times’. Although that makes no sense to me since it is improving ‘day by day’, I try to follow his directions. DO YOU THINK that oxygen levels can return to normal/acceptable levels over a period of time. During this entire year, I have not experienced any COPD symptoms or exacerbations at all. My doctor tells me that “I WILL’ unless I continue to use Symbicort as prescribed (2 puffs a day, but I usually do 2 puffs at night only.) Is Symbicort a “preventative medication”? I read nothing like that on the Company’s website.
    Now here’s the rub.......I’m an EIGHTY (80) year old man! I totally feel much younger and behave the same. I still do all my outside work, including mowing 5-acres (on a riding mower), and light garden work, and tending to a flock of chickens. I even use a chain saw and climb on a ladder to trim the star jasmine on our pergola !
    THANK YOU for such an informative site!
    ~Charles~

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  28. Hello,I am 44 yrs old.I was born with under developed lungs at 3lbs and 4 oz.I was a very sicky chold and now as an adult,I am sick as well.I was diagnosed with copd and pulmonary fibrous in 2006.today my oxygen level is at 93.I get out of breah by just sitting at times.I have sleep apnea as well and coughin and being out of breath is an every day thing for now.my question is;is oxygen therepy a need in my lfe at this point?

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    1. Hi Connie. Thanks for sharing your story and reaching out. Some people with COPD and pulmonary fibrosis do need oxygen therapy. The only way to find out if you need it is to talk to your doctor and ask whether you need to be tested to see whether you qualify for oxygen.

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