My recent pulmonary function test results were disappointing
PFT values don't always align with how I'm feeling
Frequent appointments and testing are part of life with idiopathic pulmonary fibrosis (IPF). I’ve been living with IPF for eight years now, but the number of those appointments and tests can still overwhelm me, especially as I’m a young adult trying to prioritize my career.
These visits not only take up a lot of time, but also affect me mentally. Often I feel anxious ahead of pulmonary function tests (PFTs), which measure how well my lungs are working, because few options are available to slow my disease progression.
I currently take Ofev (nintedanib), an anti-fibrotic medication used to treat IPF. There’s only one other anti-fibrotic drug available to me, and I had a negative reaction to it. I worry what will happen if my PFT shows a significant decline in my lung function.
But there’s another difficult aspect of these appointments: when my test results and doctors’ recommendations aren’t what I’d hoped for.
When test results feel invalidating
Following my recent knee surgery, which required anesthesia, I needed PFTs and a follow-up with my pulmonologist. My mobility has been significantly reduced since the surgery, so my doctor wanted to ensure I didn’t have any fluid buildup in my lungs.
At the time of my appointment, I had a slight cough, so I was happy my pulmonologist was taking a look. Thankfully, there wasn’t any fluid in my lungs, and my PFT values hadn’t changed much since my last appointment.
However, the results left me pondering what could be causing my cough if my values hadn’t changed much.
As a rare disease patient, I’ve had to learn to (informally) interpret my test results. I love the line from the movie “Five Feet Apart” where the main character says that cystic fibrosis patients “are practically doctors by the time we’re 12.” It makes me laugh because it’s true.
Because I know how to interpret my PFTs, I reviewed the full results and noticed that a few of the values were lower than normal. I asked my pulmonologist about that, and she explained that doctors, when evaluating a lung function test, use the cumulative average of the two best scores. This average is used to determine a patient’s baseline.
That makes sense for when I’m feeling well, but when my symptoms are better explained by my worst values, having my best ones documented can feel invalidating.
My newfound understanding left me feeling disappointed, as the recorded values didn’t seem to reflect my health status. I look forward to my next post-op follow-up appointment, when doctors will try to determine if my cough is related to the surgery, IPF, or another respiratory issue.
How do you deal with disappointing appointments and medical news? I’d love to hear from you in the comments.
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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Linda C Norberg
It can be devastating getting disappointing test results. I am 70 not younger as you are I have pulmonary fibrosis with emphysema (CPFE)also rare and only really studied. I have never really been a Psychiatric or therapy person. How ever with the poor prognosis it was recommended that I might benefit from it. Originally I thought so what do I even talk about and how are they supposed to understand what I am going through. I have been going to an excellent therapist who is helping me a lot. I also found an online group of people who have exactly the same disease as me and have been helpful with information. My pulmonologist referred me to her and I am glad I took his advice. Best of luck
Nancy Padilla
I still don’t understand why they strive to take the best result of the breathing test when it seems to me that they should baee things on the worst test b cause as I have progressed with this disease my breathing is harder and harder even though my oxygen levels are still in he 90s.
Prefer to be anoamous
I received some great advice to go live your life and let the doctors do the worrying for you. Only research as problem arises because everything on there list of side effects you will adventually get through your journey. Our jobs are to exercise, drink plenty of water and avoid foods listed on OFEV medicine information and eat nutritionally some how with all the limitations on food restriction. Yes, agree to push doctors for answers when something is not right and don’t give up until your satisfied with there answer; otherwise, vrun the issue by your primary doctor or other doctors involved and compare answers. I am like you I still read up on things don’t always understand it all but try to educate myself without getting overwhelmed as that can stress you out and work against you. I do recall reading something anesthesia can have an effect on lung function. Look up this topic it will point you in the right direction also there are breathing exercises after general anesthesia that can help to avoid pneumonia but appears not to be first choice with people with IPF but web information not always correct either. Hope this helps.
type of anesthesia used with IPF patients to avoid further lung damage.
Look different types of anesthesia.
ROBERT WYNN LEHR
HI EVERYBODY, THIS IS MY NOTE TO ALL THOSE THAT HAVE IPF.. WHICH I WAS DIAGNOSED WITH LAST JANUARY 2024.
BUT AT 85YRS OLD FOR ME ITS NOT SUCH A BAD DEAL,, I FELL LIKE A CAN OF PEAS.. EXPERATION DATE..OR BEST USED BY.. LOL IF I WAS A MUCH YOUNGE SAY 40 I WOULD ME REALLY PISSED OFF.. SO FOR ALL OF YOU THAT HAVE IPF AND ARE MUCH YOUNGER ,, YOU HAVE MY LOVE AND BLESSINGS AND LOADS OF PRAYERS.... NOW AS TO THE MEDS BECAUSE MY LEFT LUNG IS SOLID LIKE CEMENT AND THE RIGHT WORKS ONLY 35 TO 45% I HAVE DIFFICULTY WALKING MORE THAN 50 FT AND THAN IAM OUT OF BREATH.. I GUESS I WONT SIGN UP FOR THAT MARATHON TOMORROW..LOL AS MY DOCTORS HAVE GIVEN MY 12 TO 36 MONTHS TO LIVE,,, BUT THATS OK AT 85 IAM GOOD WITH IT .. ITS MY FAMILY THAT HAVE A PROBLEM WITH IT,,LOL I WAS ON OFEV FOR ARROX 5 MONTHS THAN HAS TO STOP IT WAS A VERY DIFFICULT MED FOR ME TO TAKE ALONG WITH THE 25 OTHER HEART MEDS I TAKE FOR VERY BAD HEART CONDITION... BUT THE GOOD NEWS LOL IS I STILL HAVE A HEART AND A GREAT SENSE OF HUMOR.. YOU ME DEAR FRIENDS LIVE FOR TODAY AND KEEP ON SMILING THE WHOLE WORLD WILL SMILE WITH YOU BOB LEHR LIGHTHOUSE POINT FLORIDA.... LIFE IS WORTH LIVING TRUST ME...KEEP ON KEEPING/ LOVE YOU BOB
Stu
I was diagnosed with IPF over 5 years ago and have been taking Pirfenidone since diagnosis. Fortunately my PF has progressed slowly. I have stopped taking PFT's because of the apprehension of the possibility of seeing my test results deteriorate. Since there is nothing else doctors can due other then prescribing a medication I have I have been taking for so long and possibly pulmonary rehabilitation, why should I subject myself to the mental stress of regular PFT's. We all understand this is a deteriorating disease and eventually the symptoms will get worse. I don't need PFT's to tell me that. I do take an annual HRCT to see if the fibrosis has progressed and to check if I have any other problems that have developed in my lungs. Charlene's case is different because she had a knee operation and was under anesthesia so I understand the need for the PFT's.
Like many of you I've done a lot of research of this disease, so much so that my pulmonologist thinks I know as much as he does. Hopefully the many trials of new medications will give us some hope.
charlene beck
This was all very helpful today. I too get very discouraged w the PFT results. I am not going to do it... You gave me that power..... It is such a very stressful test. awful and tiring. I get exhausted and very very anxious w it.. Thank you so much. IPF about 4 yrs
charlene beck
i would love to communicate via email w someone if interested. I have no one to talk to about this disease. let me know and will send email address or phone
Randall Thornton
Hello and good afternoon. I just read all the postings and thought I might add a note or two. Feb of 2020, I ended up in the hospital due to flue like symptoms. I was being examed and the cna pulled the stick out of nose and said I had covid. I didn't. Well, they put me a coma and there I stayed for a couple of weeks and then they sent me to a poor excuse of rehab. They didn't know what to do with me so sent me to another hospital. That hospital knew there was something doffenently wrong and not covid. The surgeon took one look at me and said she knew what the problem was. So the next day I was in surgery and had my right lung removed and died. As you can see,I was revived. Anyhow, after almost 4 years of visits with my lung doc, I was there for the biannual lung test where you hoff and puff. I told her I was really worried about this test and hadn't sleep the whole night. Well, I didn't make it thru the test and about passed out. It was determined at that time I needed hospice because they could supply liquid oxygen and personal care I would need. I had maxed out the reg oxygen and it just wasn't doing enough anymore. I have been with them now for 6 months and I keep going downhill. All I can do anymore is fight it and ask God for his help. I see the hourglass of my time is about done, but I keep fighting it.
Someday they might actually get drugs that will stop this disease and send it packing or at least stop it. SO, to my fellow IPF'ers, God bless you and keep up the faith.