Test Results and Being Happy with Stable

Test Results and Being Happy with Stable

younger than 30

For those of you familiar with idiopathic pulmonary fibrosis (IPF), or any interstitial lung disease (ILD), actually, you will likely know what a pulmonary function test is. If you are a patient with any type of ILD, chances are you have had a pulmonary function test, or many, as doctors and specialists monitor the progression of your disease.

I used to dread having these tests done, not because they are invasive in terms of being poked or prodded with needles, but because I often saw or was told that my lung function was declining. Various measurements are taken during a pulmonary function test, which can be read independently of each other and are read collectively to summarize how your lungs are functioning. Done frequently, it used to scare me as I was told repeatedly with each pulmonary function test that my lungs seemed to be getting worse.

Lately, however, with an adjustment to my medications, as well as an intense pulmonary rehabilitation regimen, I have seen my lung function stabilize over my last few pulmonary function tests. When people ask me how my appointments go, and I respond that things are stable, they’re often surprised when I appear happy to report stable rather than improved.

Here’s the thing: No two ILDs are the same, and even patients with the same disease find it can manifest itself and progress very differently from patient to patient. Because of this, protocols and the way a disease is treated and monitored for each person vary. That’s the reason some doctors and specialists can stabilize the progression of a disease in one patient but not in another.

I have witnessed people with IPF, some of whom I would now consider close friends, quickly deteriorate because their disease progressed rapidly. I have seen others whose lung function and disease remain stable for several years before anything changes for them.

The truth is no one really knows why this difference exists. So I truly am happy when I can report that things are stable with my lungs, even though there may not be an improvement. In fact, I would be happy if my lungs remained stable for another several years.

I often say to my colleagues that if my lungs would just stabilize and I could wean myself off oxygen when doing stationary things, I’d be happy. I would be happy to be able to get up from my desk and walk to the bathroom without being tethered to something by a nasal cannula. I know how unlikely it is that I will be able to participate in active exercises for my lungs, or anything that is high-impact and is a good workout, and I am OK with this. All I want is to be able to have short periods off my oxygen and not feel like I am drowning or gasping for air.

For this to happen, I need to hear that my lungs are stable and, therefore, not declining, so I can try to push them a little bit as part of my weaning plan. So, yes, I am very happy when the results of my pulmonary function tests indicate stable. In a perfect world, they would show improvement and would continue on that trend of getting better and better. But we don’t live in a perfect world. If we did, IPF and many other ILDs would not exist.

To other IPF patients out there: What do you hope for when you receive the results of your pulmonary function tests? Although I write about being happy when things are stable, it does feel a little strange not to be actively hoping for improvements. There are two reasons for this. First, I don’t want to be unrealistic because improvements in patients with IPF are rare. The fibrosis, or scarring, is permanent and is not reversible. And second, because improvement can push us farther away from receiving a lung transplant.

As you know, lung transplant is the only cure for IPF, and it is a strange balance of essentially being sick enough to warrant being placed on the list and receiving organs, and being strong enough to recover physically from such intense surgery.

When I think about what I want from my pulmonary function tests, I think the biggest hope I have is that things are stable enough for me to just continue living my life the best I can by doing the things I love.

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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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10 comments

  1. robert o'brien says:

    When I was diagnosed with IPF and had my function tests etc. and I discussed IPF with my pulmonologist, I accepted the fact that I have a progressive and fatal disease. I decided to follow instructions, take my medicine (Esbriet), perform pulmonary rehab and get on with my life. I use an O2 concentrator when exerting myself (i.e. rehab). My MD warned me about the internet and what I read. I see him 4X a year and FPV tests are administered. My last one (August) showed a slight improvement in the test(s) – a positive. He arranged for me to begin testing for a place on the transplant list which is extensive and ongoing. He recently returned from a conference in Milan and said some very promising treatments are entering into testing stage. I take all this in and maintain a positive attitude. Am I going to get worse? Most assuredly. Will I get new lungs? Maybe. Are new treatments and medications forthcoming? Absolutely. The other absolute is that I am going to die just like everybody else but I don’t live in fear of that absolute. I take things as they come and build around it. Mowing the grass? No. Shovel snow? No. Go hiking? No. Go to movies? Oh yeah! Go to the mall? Only when I have to😜. Out to lunch or dinner? Sure. The bottom line is, I have IPF. I am still kicking and intend to continue so. I am going to continue living life to the fullest and longest I am allowed. Ce qui sera soyez.

  2. JOHN SLIWINSKI says:

    Glad to hear that others are stabilizing. I had my PFT last June 2017 and was told by the pulmonologist from Penn Med that I am stable. I have another test this coming December 2017 and hope to God the results are the same if not better. Not having RED lines on my pulmonary function test is a God send and hope.

    To those who are not stabilizing my advice is believe that you will and never give up hope.

    God bless all of us with IPF.

  3. Lea says:

    I tried three times to leave a comment here, and couldn’t.

    Charlene, Your struggle is so real

    Nobody wants to say, “I hope ____”. I can’t wish that with a clear conscience.

    I will lift up a prayer for you and continue to follow what you write.

    I would hug if you were here!

  4. katherine broach says:

    i think some reasons we eventually lose our appetite is breathing is harder after even a simple meal. also, i may have a taste for something but the process of preparing it is too labor intensive for my supply of air. and i am supposed to be ‘improved!’ not so as i can tell!

  5. Martn says:

    I have just come from my full lung function test. The results showed that my IPF is stable. The consultant said that if the results from the next test in 9 months are the same then he will be able to discharge me. I must say that he classes my IPF at very early stage. It was diagnosed after I suffered a massive Pulmonary embolism which nearly killed me. The scan that was taken at the time showed the embolism but also the fibrosis. In a way i’m lucky it has been picked up at such an early stage, perhaps this explains it being stable now. However i do worry about the years to come

    • Charlene Marshall says:

      Hi Martin,

      Thank you for reading my columns and reaching out via the comments! That said, sorry to hear of your PE and how serious it was – that must have been really scary for you. In a way, I am glad the fibrosis was picked up for you too as people tend to do better, the earlier they are diagnosed and managed, although I wish none of us were living with this cruel disease. When you mention “consultant” do you mean your pulmonologist is going to discharge you if you have a stable test in the next 9 months? I’d highly recommend this not happen as it is important for us to be monitored by someone knowledgeable about pulmonary diseases, even if it is stable as it can change rapidly. Is there any way your physician is willing to keep you part of his patient list? Take care, Charlene.

  6. Tim Scott says:

    I was diagnosed with IPF after a routine x-ray and subsequent lung biopsy almost a year ago. I am in the early stages and do not require oxygen unless I am at a higher altitude or being active. When I exert myself it does not take very many seconds, for me to get winded. Climbing stairs will will cause my O2 to drop below 90%. I always wonder what’s going to happen. I have remained close to stable this year (within 2%). This is my first time posting so forgive my rambling.

    • Charlene Marshall says:

      Hi Tim,

      Welcome – thank you for writing! I’m glad you reached out after reading my column, all members’ contributions are valuable and I thank you for the courage it takes to connect with others about our disease. Glad to hear you’re doing okay so far without oxygen, and like you: I use it for exertion or high altitudes. Are you able to take breaks in between climbing the stairs? Sometimes I have my home oxygen concentrator at the top of the stairs so in my head “if I can just get to it”, I know it’ll help bring my saturations back up. Really glad you remain stable, are you on Ofev or Esbriet yet? Take care and do feel free to write any time! It is nice to be able to connect with others who truly understand what living with IPF is like. Thanks for writing.
      Charlene.

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