Singing to Improve Lung Health.

[mike-sturgill]

I’ve been singing in school or church for 45 years. I  was finally diagnosed just last month after a sudden onset of shortness of breath beginning in mid December. Initially I was struggling to breathe so much, I was sure I’d never sing again . Of all the disappointment that comes with IPF, that hit me hard. I get great, great joy from worshipping with the music team at my church every week.
I began trying to sing again (in the car, radio cranked) and have been able to slowly adjust my breathing technique to get through a song.

Singing raises my spirits, gives me joy and let’s others around me know I’m not giving up the fight.

 

[Charlene Marshall]

Hi Mike,

Thank you for joining the PF forums and contributing to this thread. I am so sorry to hear of your diagnosis, and sudden onset of shortness of breath. Do you suspect you’ve had IPF for awhile, based on your symptoms?

I can relate to you about the painful losses that come with this diagnosis. For me, that was playing hockey. I am glad you started singing in the car and hopefully strengthening your breathing capacity a little bit. Do you find it easier to do while sitting vs. standing in worship? I am so glad you are still able to do this and will pray that your lungs get stronger, and that you can return to singing with your music team. It is so important for us to hang onto things that bring us joy!

Warm regards,
Charlene

[mike-sturgill]

Charlene,

Thanks for the reply. Up until the onset of symptoms in mid December,  I was a very healthy and active guy. I spent 21 years as a medic in the USAF and another 8 as a civilian paramedic  before I sustained a spine injury 15 years ago that forced me out of that field. For the last 3 years I’ve been a National Park Ranger (best job ever), but I’ve had to give it up since my diagnosis.

My journey started with a simple common cold in December.  Usually I can fend those off in a few days. This time it quickly became bronchitis then pneumonia. After 4 rounds of progressively stronger antibiotics with no improvement,  I was referred to a pulmonologist.

The pulmonologist ran me through the same battery of tests that I’m sure we all went through including bronchoscopy.  When that couldn’t confirm the diagnosis,  we moved on to an open lung biopsy.

I received the results, a diagnosis of IPF, on March 19th. With my medical background and some prior candid conversations with my pulmonologist,  I was fully expecting to hear IPF.  Still not what I wanted to hear,  but not a shock. I am now on day 12 of esbriet and tolerating it ok. I have seen a transplant surgeon and as of now, I’ve got some time before that becomes necessary.

As for singing, standing is best but sometimes the fatigue requires sitting.  We just work through it. I  can’t hold out notes like I used to, and I have to sneak in short breaths, but I’m making it happen – that’s a benefit of being part of a supportive group.  I was able to rejoin the group just 2 weeks ago for the 1st time since December. That’s been good for my spirits.

I’m sorry you had to give up on hockey, it sounds like you were pretty good at it. This diagnosis changes our lives, changes our priorities but it doesn’t have to steal our joy. There’s always something to be grateful for,  even if it’s just getting out of bed in the morning.  This disease may beat my body, but I have no intention of letting it beat my spirit.

Thank you Charlene, for taking on this forum. I can imagine that it’s a lot of work for you, but please know it is very helpful. You are touching lives with your work and I’m sure I’m not the only one who appreciates your effort.

[Charlene Marshall]

Hi Mike,

Thank you so much for your reply and kind words!

I am also very glad you shared more of your story with me. A park ranger job does sound amazing! Doesn’t it feel terrible to have to give up the things we love, especially our jobs/careers, due to our diagnosis? While my workplace has been incredibly accommodating and supportive since my diagnosis, I am terrified that there will come a day when I can no longer work due to my IPF. I have however had to give up many active-type hobbies since my diagnosis, like sports and some social events. Your career as a medic must have been really rewarding, and as a patient who used medical services often, thank you for your dedication to that career.

Had you ever had pneumonia or bronchitis before? I know once some people get it they are more susceptible to getting in future, and it sounds like it did progress quickly from your cold. That must have been scary for you! Were you reluctant about the lung biopsy when the bronchoscopy couldn’t confirm it? I know many people opt out of that, even though they know they need it, due to fear of making their condition worse. How was the lung biopsy for you?

I am glad to hear that you have some time before considering transplant, but that you were able to ask some questions to the transplant surgeon. If eligible, do you think you’ll proceed with it? I am also thankful that you are tolerating Esbriet okay.

Reading that you were able to re-join your singing group, and that you’re making it work despite your diagnosis and alongside your supportive group, gave me goosebumps. Thanks for sharing that. I do hope you can continue to sing with them for a long time, even if it is slightly modifying it from how you used to be able to sing. Kudos to you!

I will carry your message forward with me, as I completely believe you are right: this disease can steal a lot from us, but we always do have something to be grateful for. I will remember this and your story when I need some uplifting, thank you again for sharing. And, thank you for your kind words. I find so much inspiration, hope and friendship from these forums so it really is a privilege to be the PF Forum moderator.

Please keep in touch and write any time! 🙂
Warm regards and best wishes,
Charlene.

[julie-froblom]

I play saxophone and music is a very important part of my life. I play in public often. I hope to be able to continue playing for a long time. I do need to take more breaths than I used to. It is getting harder to play long phrases. Music is magical.

Keep singing,

Julie

[Charlene Marshall]

Hi Julie,

Thank you so much for sharing, and welcome to the PF forums!

I love that phrase: “music is magical”…. I couldn’t agree more! Sadly, I am not very musically inclined but I certainly have an appreciation for those who are, and I find musicians and singers incredibly talented. My brother taught himself how to play guitar, and he is amazing at it. It could be argued that it saved his life as a therapeutic outlet when things were tough for him in his adolescent years.

As I write this, I just glanced over at the beautiful guitar I was given for Christmas last year and sadly I have yet to learn how to play it. This is on my bucket list though, because I’d love to be able to play the guitar around the fire (with a mask, of course) at my cottage in the summer time.

What type of public venues do you play at Julie? Sounds like you’re a wonderful musician.

Thanks again for sharing, and I look forward to getting to know you a bit more through the forums!

Warm regards,
Charlene.

[dulecia-lunde]

Hi Charlene, I agree singing does relieve my lung pain. I have a passion for singing and poetry. I compose and write my own too. I feel its also connected to the emotions. The music and song that you are singing changes your mood and focus of what you are experiencing physically.

[Charlene Marshall]

Hi Dulecia,

Thank you so much for your reply, and sharing with us how singing and composing music is helpful for you! I can only imagine how therapeutic it is to compose and write your own music… kudos to you! It is likely similar to writing for me, where it gives me an outlet to get all my thoughts out on paper instead of holding them inside my mind. However, to then be able to share them with people through music must be a wonderful feeling. Do you ever share the music you compose or write with others? I would understand if you also chose to keep this private. I’m so glad you have this outlet. This is actually why I have it on my ‘bucket list’ to start learning how to play the guitar, although I’m not quite there yet … I have bought one though! 🙂

Cheers,
Charlene.

[mike-sturgill]

Charlene,

I had some concerns about going through the open biopsy but I really needed to have an answer – a diagnosis.  None of the prior tests confirmed anything.  I met with the cardiothoracic surgeon a few times before the procedure and was comfortable with him and the facility where the procedure would take place.

Things went extremely well and I was able to come home the next day. I had some pretty significant pain the 1st few days but that subsided and after about a week I was pretty much back to normal.

As for the transplant,  if my condition warrants, and I believe the risk is worth the reward at that point,  I would certainly give it a go.

[Charlene Marshall]

Hi Mike,

Thanks for your reply 🙂

I can certainly understand the need to have a confirmed diagnosis, and I think I would do the same as you: opt for the lung biopsy if it were to get me a definitive diagnosis. I know many people share the fear that the risk of an open lung biopsy are too great for them, which I can understand that point of view as well, depending on how badly you want your diagnosis confirmed I suppose. I am sure being comfortable with the surgeon was also really helpful, and I’m glad you found the support within him/her that was most helpful. Even the HRCT scan didn’t reveal any indication of IPF? That is so interesting…

Glad to hear that the procedure went well overall, and that your pain wasn’t too bad after the first few days!

Thanks again for sharing re: your thoughts on lung transplant as well. I do hope it doesn’t come to this for you, although I know it can be life-changing for IPF patients when their disease reaches a certain point.

Take care and thanks for writing.
Charlene.

 

[bev-kunkel]

Thanks for the links to the article.  Singing is an important part of my worship and because I could no longer sing and read out loud I was moved to make the doctor appointment that resulted in my doctor ordering many tests which led to my diagnosis of IPF.  And, because of this website along with others I became aware GERD was one of the risk factor for the disease.  (My doctors obviously were unaware themselves) And just like everything else because it was uncomfortable to sing or read out loud I stopped doing it which obviously was the wrong thing to do.  I learn something new all the time about this disease and I thank you for contributing to that knowledge.  Thanks.

 

 

[Charlene Marshall]

Hi Bev,

My pleasure for sharing it, and I am glad you found it helpful! Welcome to the PF forums, we’re glad you’re here, although I certainly wish none of us were dealing with this cruel disease.

When was your IPF diagnosis, it sounds recent? Giving up what you loved to do, which sounds like singing in your worship is so difficult. I remember giving up my favourite sports and social life was probably the hardest  part of my diagnosis and living with IPF.

Do you think as a result of this article, or others’ experience, that you’ll try to do some more singing or out loud reading again? It might be tough, but it does sound beneficial. That being said, I’m sure the experience is different for each person. Goodluck, and please feel free to reach out any time!

Warm regards,
Charlene.

[bev-kunkel]

Hi Charlene, Because of the book (purchased last month because of an article from this website) by Noah’s Pulmonary Wellness I have already returned to doing many things that I had discontinued.  The singing as part of my worship I have renewed my emphasis without fear that I am harming myself and the link you offered validated my efforts but also encouraged me to do more.  My diagnosis is recent and only after searching on line have I received the vital information necessary for me to not let this disease define me.  I was actually diagnosed in June/July 2017 but only since I have demanded to see a pulmonary care physician that I actually have an appointment on May 17th (almost a year from original diagnosis). I was told right up front that I would probably only live 3 years.  Currently, I know & think that is bull. I feel pretty darn good for a gal with a death sentence and have plenty of energy.  The posts I have read from folks breaks my heart; scares me to death but also gives me hope from some pretty courageous individuals; pioneers in rare disease survival !!!  Previously, I was on tons of medications treating symptoms only and they almost did me in. I fired my doctor and then discontinued around 9 medications beginning December 2016 and started to come back to life.  I was up off the sofa no longer fighting fatigue but rather as of last summer gardening, digging in the dirt, planting, mowing, climbing on the house, painting, scraping; I think you get the gist.  I take lots of vitamins & enzymes; try to eat the foods that contribute to my well being.  I get plenty of sunshine and moderate exercise. I could be pretty mad and indignant about all the missed opportunities from wrong diagnosis but that would not help me or anyone else.  I have not really known what to write about or even if I fit in but I am thinking I will be close to my PF community for some time to come. So it is with warm personal regard that I respond to you, Bev K 🙂 🙂 🙂

[Charlene Marshall]

Hi Bev,

Thanks so much for your reply – and I am so thrilled that you’ve returned to doing some activities you had previously given up, especially singing. Kudos to you! It is not an easy feet to return to things that are difficult for us, or that may cause us pain and discomfort so I am inspired by your strength and am thankful for your sharing this experience with me 🙂

I think it is so important that we advocate for ourselves as patients, so I am really glad that you’re getting in to see a pulmonary care physician, and that you’re feeling so well. I’ll keep my fingers crossed that it remains this way for you! I am often inspired by the stories of others on this site, some who have been living with IPF for 10+ years, and I am always grateful to those who share their stories. I was originally given a “likely” prognosis of 3-5 years as well, although the doctors admit they have no idea how this disease will manifest itself in me – a 30-year old, active young adult. So, I am riding the wave and am glad that for the most part, I feel pretty good too!

How amazing that your body seemed to rally after stopping so many medications. There really has to be some sort of credibility in the natural management of this disease – enzymes, vitamins, healthy eating, etc. Your attitude about a misdiagnosis, and not dwelling on it is very admirable – thank you for brightening up my evening with your story! I’m glad you’ve found this community, and please do let us know how it goes with the pulmonary physician in a few weeks. Sending you best wishes for that appointment!

Warmly,
Charlene.