How I’m Managing Increased Breathlessness

How I’m Managing Increased Breathlessness

For the third day in a row, I’ve been feeling angry with my body, particularly my lungs. I’ve been experiencing severe breathlessness. While I don’t have signs of a viral or bacterial infection, I’m struggling to hold a conversation because of my need to pause frequently. This level of breathlessness is unusual for me, despite living with idiopathic pulmonary fibrosis (IPF), a chronic lung condition that causes symptoms such as dyspnea, fatigue, and chronic underoxygenation.

I often use supplemental oxygen periodically throughout the day to give my lungs a “boost” or to feel more energized. However, I now need it for extended periods and more frequently. Over the last few days, I’ve struggled to climb stairs — an activity that I find challenging but usually manage to complete.

On the way upstairs to my office this afternoon, I had to stop to catch my breath. When I reached the top, I felt as if I couldn’t get enough oxygen. I, understandably, felt a little nervous and started wondering about the cause of my breathlessness.

I decided to go online to look into the possible causes. However, after spending a few minutes browsing websites, I recalled the ineffectiveness of this approach. I discovered hundreds of frightening reasons for my breathlessness, all of which are unlikely. So instead I paged my transplant coordinator, who promised to get back to me the next day. My symptoms don’t need immediate attention, but I am concerned at the intensity of my breathlessness and its sudden onset.

During my online quest for answers, I discovered some resources that had useful suggestions on ways to manage breathlessness. While this information is unspecific to those with IPF,  I found it helpful for future reference. Experiencing breathlessness is frightening, and the more tools that we have to bring us relief from this unpleasant symptom, the better.

Following are some of the suggestions I found to deal with breathlessness:

  • Mind-body connection: Relaxing your body and focusing on your mind while breathless is incredibly hard to do. A post on the British Lung Foundation’s website describes a breathing control method to manage breathlessness: place one hand on your chest and the other on your abdomen, close your eyes, and focus on slow, controlled inhalations through the nose and mouth exhalations.
  • Adjusting your position: Unsurprisingly, how you position your body can affect breathlessness. The Cleveland Clinic recommends some physical positions that can help reduce shortness of breath.
  • Breathing techniques: Focusing on your breathing may be difficult during prolonged periods of breathlessness because of fear and anxiety, but exercises such as pursed-lip or diaphragmatic breathing can bring relief.
  • Medication relief: Like some of my fellow IPF patients, I have been prescribed rescue inhalers. Some members of the Pulmonary Fibrosis News Forums have found inhalers to be effective; others do not. Each patient has different needs and challenges, and any decisions about medications should be made in consultation with your doctor.

I still feel uncertain about how to deal with my breathlessness. I intend to wait until I can speak with my medical team to advise me on my next steps. However, the tips I’ve shared are helpful if I experience episodes like this one again. Unfortunately, I know that as this disease progresses, this symptom is likely to become more frequent.

Do you have any suggestions to help combat breathlessness?

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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.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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14 comments

    • Charlene Marshall says:

      Hi Judy,

      Thanks for writing and sharing your kind words about my column. I so appreciate hearing from you!
      Yes, humidity affects my breathing too and I can’t help but wonder if some of this breathlessness is coming from the drastic change in Hawaii temperatures to those back in Canada. It is a difference of 30+ degrees, so it could be that. It is slowly starting to improve with a small dose of Prednisone. Thanks for writing 🙂
      Charlene.

  1. Bajrang Powers says:

    I would experience what is referred to as ‘air hunger’, this was accompanied by a rising anxiety as I felt like I wasn’t going to get through it. A friend in palliative care suggested I have a .5ml syringe with oral solution of Morphine Sulfate and squirt it under my tongue. I asked a few friends in the medical field and was told it was the ‘drug of choice’ in hospitals for air hunger to ease the panic. I asked my GP and Pulmonary Dr.s and no, in that amount it would not cause a problem with any of the wheelbarrow full other drugs I consume daily. I’ve had some unpleasant episodes with Morphine coming out of many surgeries, as well as having an addictive personality, and was a bit concerned to try it. However, it really helped, the anxiety stepped aside as did the feeling that I couldn’t catch my breath. It is a controlled drug and I have no idea how easy/hard it is to get. Don’t buy it at your local pool hall.

    There is another phenomenon that has become really helpful, if I keep a single loaded and capped .5ml syringe by my bed, in my meditation room, and in each car (with copy of the prescription) I find I now rarely use it. Just knowing it is there allows me more confidence and calmness (very crucial) to weather the incidents.
    This is clearly not for everyone, your Dr. can advise you as to the validity of your use.

    • Charlene Marshall says:

      Hi Bajrang,

      Thank you so much for reading my columns and reaching out via the comments. You’re so right in your description of ‘air-hunger’ and how it feels… its terrifying to feel breathless, and like you can’t get in enough oxygen. I’m so happy to hear of what your friend suggested, and that it is helpful for you, and not causing issues with the other medications you’re trying. I think I will share this with the PF forums as well, as this is something we talk about often – crediting you accordingly of course. Aside from it possibly being tough to get, this could really alleviate that fear and anxiety of being air-hungry as you describe. I’m so glad you wrote about this, and that it is helping you!

      Thanks again, please keep in touch about this continuing to work for you!
      Take care,
      Charlene.

  2. For a month in a half, I’ve changed my breathing habits and have found success in managing breathlessness. I read an online article that indicated people with chronic pulmonary conditions are usually mouth breathers. I was definitely a mouth breather. I have IPF and Asthma so I’ve been dealing with breathlessness for awhile. I learned a breathing technique developed by Dr. Buteyko, Russian Cosmonaut Doctor. There is an organization that is dedicated for teaching this breathing method… http://www.buteykobreathing.org
    Basically, the breathing technique is learning how to isolate your breathing through your nose, all the time. I’m forced to speak all the time because I’m an educator. This technique works well for me. This is not a cure for breathlessness because I still need to pace myself when participating in physically demanding exercises like practicing martial arts. However, I have found success in normal day to day activities like speaking, walking, climbing stairs, and sleeping. I hope this helps you too.

    • Charlene Marshall says:

      Hi Richard,

      Thank you for writing and sharing your experience with us regarding this topic. After reading your comment, I spent some time trying to catch myself in regular breathing patterns, and you’re right, I primarily am a mouth breather too. I will definitely take a look at the site you shared, as I would imagine it will not only help me but many people with IPF or other pulmonary conditions experiencing breathlessness. Thank you! I’m so glad it has been effective in helping you, and glad you can still continue to do some of the physical activites that you enjoy. I so appreciate your sharing.
      Sincerely,
      Charlene.

      • Rene Hakkenberg says:

        I am disappointed that the Buteyko website does not describe how this breathing technique works so that we can all try it. It is hard to believe that the technique is so complicated that we need a teacher to learn about it. May be Richard Bowden can describe the method in more detail so we can all benefit?

        • Charlene Marshall says:

          Hi Rene,

          Thanks for writing and as always, for reading my columns 🙂
          I didn’t watch the full video for the Buteyko technique, but I’ve heard from others it is really helpful. I will see if I can find an instructional video and share that with the forum. If not, good idea to reach out to the teacher and see if they can provide instruction for us and/or Richard. I’ll see what I can find out for you.
          Charlene.

  3. Chuck says:

    Hi Charlene
    You describe what happens to me on a almost nightly basis ! What do I do ? Good question ! Seeing how this has been happening now for sometime I found certain things that have and still do happen to help me . Proping is sometimes a big help , just a little or as much as you thing you need . I use music ( nature sounds and those kinda things ) lol sometimes when I use soothing music or sounds I find all has passed and its morning and time has passed or its time to get back to what I was up to at the time of occurrence . Or I use the most powerful tool a person has your mind , I will put myself in a place where there is no problem , it relaxes my breathing and me . There are many tools I use . What I make sure I never , never do panic and believe that this is it , I’m done , it has beaten me , no never put yourself in the position of defeat , face these times through the eyes of strenght of mind and body .
    Always your friend
    Chuck
    End

    • Charlene Marshall says:

      Hi Chuck,

      Thanks so much for sharing, though sorry to hear you’re experiencing this as well! I think I’ve found the culprit as to why I’m experiencing this; seems I brought a bit of a bug home from Hawaii but it is being treated so the breathlessness has subsided a bit already which I am grateful for. Meditation and focusing on relaxation is so important – kudos to you for being able to do that with your mind, and having this help you. I like this option because it doesn’t require any type of prop and you can be anywhere to do this as well. So important to remember not to panic as well, thanks for sharing your tips and tricks. This will be helpful for me, along with others, I am sure!
      Many thanks,
      Charlene.

  4. Tim van Someren says:

    Hi Charlene

    You may have heard this one before, but a recognised technique to ease breathlessness here in the UK is to hold a battery powered fan to you face and feel the breeze on your nose and mouth.

    I was given a fan by my transplant co-ord and it really genuinely helped. I never got a total explanation as to why; some people suggested we have a reflex that interprets the breeze as increased air intake and this relaxes the diaphragm. Whatever the reason, it definitely works and a cheap fan can be found on Amazon, or at many pharmacies.

    I did get to a stage where my breathlessness was problematic and causing me panic attacks. I got good relief from Hypnotherapy and also from counselling, which were arranged through my local palliative care team at a nearby hospice. Over here, hospices are really helpful centres for symptom management, and not just somewhere for the dying. I don’t know if they provide the same help in the US or Canada?

    And finally, as others mention, Oramorph is also very helpful and relatively side effect free as you only need a small dose. I almost wondered if it’s a kind of placebo effect, but – if it works, who cares?!

    After a PF journey that really tested me to the limits, and nearly took my life, I had a double lung transplant in June and I’m now feeling great.

    Good luck!

    • Charlene Marshall says:

      Hi Tim,

      Thanks so much for reading my columns and getting in touch via the comments. Nice to hear from you! I actually had heard about that relief for breathlessness in the UK, although I’d not spoken to anyone directly who could confirm the benefits. I’m grateful that this has helped you, that is excellent to hear. Palliative care here in Canada is indeed similar, whereby they focus on quality of life and what can give patient’s that (ie. techniques to alleviate difficult symptoms) so it might be worth it for me to speak to my transplant team about this. Thanks for that suggestion!

      Congratulations on a successful transplant, that is wonderful news and I am so happy to hear you’re doing well. Please keep in touch and thanks again for writing.
      Charlene.

  5. Rene Hakkenberg says:

    Some advice against shortness of breath. First, inhale deeply using your diaphragm for 2 seconds and exhale through pursed lips for 4 to 6 seconds. If the weather is hot or humid go to an air conditioned room; airflow helps, so put your face in front of a fan; if possible breath directly from the airflow of an air conditioner or do the same from your car’s air conditioner. People say that it is better to inhale through the nose but, except for the fact that nose hair may eliminate some dust, I do not understand why that is better. To me inhaling through the nose means more airflow restriction.

    • Charlene Marshall says:

      Hi Rene,

      Thanks for sharing those thoughtful tips on relieving shortness of breath. Means a lot, especially to know if they work for someone experiencing similar symptoms as I am. I heard through another member of the forums that placing your face in front of the fan is a popular relief of breathlessness in the UK. I’ll have to try that!
      Regarding the Buteyko technique and the website not offering an instructional video, try this link and see if it helps:https://www.youtube.com/watch?v=tKaUEVnducI

      Let me know!
      Charlene.

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