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.

***

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.

5 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!

Leave a Comment

Your email address will not be published. Required fields are marked *