New to this forum and kind of confused

[Jonathan Poland]

@dmwargas

Hi Donna,

I feel your frustration!  I find very few doctors who are willing to spend time explaining everything at a patient’s level of understanding.  And I’m not a doctor so take my comments for what they are worth.  But your feelings of uncertainty, etc. are common for nearly everyone who has this news thrust on them for the first time.

But let’s start with the good news:

– No tumors or signs of lung cancer that is often associated with smoking!  That should be a big relief.

– The airflow obstruction is MILD.  I interpret that to mean that your doctor is watching for COPD but that it hasn’t become severe enough to require treatment (yet).

– I am curious if he said more about the “mild scattered scarring”.  That could mean lots of things.  Did he describe the scarring pattern with terms such as “crazy paving”, “ground glass”,  “honey-combing”, or other odd terms?  They describe how the scarring looks on a CT scan.   Lack of those terms suggests that he is not concerned about any of the worse types of fibrosis.  It also means that whatever you “might” have is very early on.

– I’m also curious if he performed a Pulmonary Function Test (PFT) where you sit in a box or in some other way get your breathing capacity measured.  (If you did get a PFT we can help you understand the numbers.)  But in any case, the fact that he refers to “obstruction” and not “restriction” (2 very different things to a doctor) also points to COPD and not other more serious diseases.  As bad as COPD is: I would rather have that than what I’ve got.  COPD is manageable.

– He doesn’t want to see you again for 6 months.  Be glad for that.  If you were sick, there would have been more tests, trial medications, more tests, frequent visits, etc. trying to figure things out.  Doctors just can’t look at a CT scan and make a diagnosis.  The CT is just one tool to help.

– He did not use the word “fibrosis” which is Latin for scarring.  But to a doctor, it also means progressing and concerning.

I would guess that overall this is a pretty good outcome.

DO NOT LOOK AT THE INTERNET.  There is a lot of misinformation and conclusions that do not take into account modern advances in diagnosis and treatments.

DO FOLLOW this forum, and if you want, the Pulmonary Fibrosis Foundation.  But remember, your doctor is not willing to call what you have Pulmonary Fibrosis and you shouldn’t either.  Again, I would be very hopeful if I were you.

– jon

ps.  My GP forgot to tell me not to look at the Internet.  My wife and I went through a lot of needless stress before my pulmonologist straightened us out.

[Christie Patient]

Thanks for your detailed and excellent response @jonpoland !!

Donna, you are more than welcome here and as you can see there are a lot of compassionate and knowledgeable folks here. I agree that it sounds like you shouldn’t worry too much (based on your doctor’s 6 month check-up and lack of definitive terminology). As someone who suffers with an anxiety disorder, I know that it’s silly to tell someone not to worry, so I apologize, but based on what you’ve told us, I don’t think you have reason to panic.

I’ll echo what your doctor and what Jon said, and urge you NOT to look on the internet. It is an act of self-sabotage that will cause you heaps of unnecessary suffering. If anything, you have found a great community here and I know people would be happy to offer you advice based on their actual experiences, not just information (or misinformation) that is on the internet elsewhere and may not apply to you.

And I know that doctors can sometimes seem like they are too busy for you, but it is your right to ask them for more information/clarification and help. It’s your health and your life, so maybe just give them a call and say “hey, I am really confused and anxious about how my appointment went, would you mind explaining things to me as if you were explaining them to a child? I want to understand what is happening to me so that I feel less worried.”

Christie

[steven mason]

My fathers physician at the mayo also said do not look at the internet. But I do not agree with that–yes it is daunting especially without any medical background. But I would prefer to know. The dr told my dad it was fine to drink his scotch–my dad was greatly depressed. There was a post about wine–and how to deal with the stress of this disease. Hell–at the beginning–a different physician–used the word “idiopathic”–which at the time I did not know was ancient greek for something like peculiar suffering. What a terrible word. I think someone should write something about marijuana. Here in florida we legalized marijuana for medical purposes–I voted for it. One forum writer wrote about the calming effects of morphine–beyond pain–why not consume a medical marijuana cookie? What is the consensus of the med community 0n this issue–or is there a consensus?

[Manzurul Khan]

I can’t agree that staying away from the Internet is always a good thing. I picked up so much valuable information by deep diving on the Internet. When my doctor diagnosed me 5 months ago from an X-Ray and pronounced that I had 3-5 years to live, it was a debilitating feeling. I started my own research and after applying many of the ideas I picked up from Internet, I feel better. My condition is stable or even trending in the right direction. I have not started Esbriet or Ofev yet. My 6-minute walk test results and lung capacity have improved. I learn from this forum each week and also from PF Warriors group.
Best to everyone.

[Charlene Marshall]

@mhkhan93 — you definitely have a valid point, too! The internet and peer support (from other patients) can be invaluable, I agree. I think the struggle is that many people don’t use credible resources to search for information about IPF and what emerges is often outdated and scary for patients, especially those newly diagnosed. I’m glad you were able to source good information that helped you feel better, and that you’re remaining stable. Thanks for taking the time to write us and share your thoughts!
Char.

[Christie Patient]

@mhkhan93 & @charlene-marshall Yes that’s true. Peer support is really important, and I agree that finding good sources with accurate information can be really helpful to understand what’s going on. The trick, as Charlene mentioned, is knowing how to parse out what’s accurate, up-to-date, and relevant to you, which can be a challenge. But I also must say that wading through the depths of the internet without a diagnosis could be really treacherous and anxiety-inducing. It certainly would be (read: has been) for me in the past, both with my own health and the health of those I love. But we are all different of course, and other folks may be better equipped to handle that than I am 🙂

[Joy Hoffmann]

So who has Pulmonary hypertension!
I feel like death is just around the corner.

I have both

IPF and PH

 

[Jackie Kalina]

I do not understand this warning to not rely on internet as it is outdated. I was diagnosed in May 2020 with IPF. The first time I saw my general doctor he told me I had a diagnosis of IPF after ex rays and Cat scan. He said the prognosis was 3-5 years. I then went to a pulmonologist who concurred with diagnosis and said 3-5 years to live. As I am in early stages, no coughing, no support of oxygen, 96% oxygen capacity, I felt the guillotine had fallen. He said, “Come back in two months!” I thought, “Two months? I want help now!”
I went to another pulmonolist and he told me the 3-5 years years diagnosis was not current with new meds.He put me on OFEV. My question, is WHY doctors are still giving out the diagnosis if 3-5 years if not current? I am now a year into diagnosis and remain stable. I “KNOW” I have something but it is not that debilitating yet. I can not take the 150mg 2x a day of OFEV. Too many side effects and not worth living like that. I take 100mg 2x a day. It’s just so confusing and scary. I know there are no “hard and fast” rules with this disease. It just seems there needs to be an update on longevity when you receive this diagnosis.
Jackie 80 year old woman

[Charlene Marshall]

Hi @jackie-leko-kalina

Good question, and it’s less a warning vs. a discussion so it’s important to be mindful of that 🙂 For some clarity, the 3-5 year prognosis was actually released before the two anti-fibrotic medications for IPF (Ofev and Esbriet) were approved for use in slowing down the progression of the disease by the FDA. This is what people mean when they say it is “outdated”; it doesn’t include those who are on the medications that are effective for them. Does this help? Your question is an excellent one: why are doctors still telling patient’s this when we now have Ofev and Esbriet? I’d love for them to change their approach in telling patients this as it is really scary! It is oftentimes easier to educate fellow patients, through platforms like this one, than to get the doctor’s to change their words/actions so personally, I’m really grateful for this discussion thread.

Take care,
Char

[Marianne]

Hi all –

None of my doctors said anything about 3-5 years to live.  My pulmonologist warned me about the information on the internet.  Shortly after diagnosis – about 8 months I went on Ofev.  I  not all doctors are telling patients that they only have 3-5 years to live.  There are people on this forum who have lived much longer than 5 years.  I think it is an individual case by case.  I believe that some people are diagnosed earlier than in the past.  I believe attitude has much to do with one’s health.  You need to advocate for yourself.  I have many friends who are seniors like myself who have much worse health and diseases than IPF.  Eat healthy, have a good attitude, help others when you can, exercise if you are able.  Have a positive outlook on life.  I know this is not easy but it makes living so much better and fun.

Marianne

 

[Peggy McBride]

Consult with the second pulmonologist. When my husband’s cough would not go away, he was referred to a pulmonologist who said that he had “just a little scarring of the lungs – nothing to be concerned about.”
at the next visit about six months later the same doctor said “how long have you had idiopathic pulmonary fibrosis”?  We had no idea what that was. Fortunately the Internet told us a great deal more about the disease and we consulted with the second pulmonologist who explained how serious the condition was and the options – Esbriet and Ofev – And helped us understand the disease then deal with the symptoms. If we had not sought a second opinion and we had not researched the disease on the Internet, I doubt any treatment ever would have started.  Be aware of doctors who know little about your condition and available treatments!

[Charlene Marshall]

Great advice @peggym! I totally agree with you… and unfortunately, there are many MDs who don’t know a lot about IPF.

[Christie Patient]

A fair point indeed @peggym! I am all for second (third, fourth?) opinions when it comes to pretty much anything troubling. It’s true that many doctors aren’t as up to speed on ILDs as they should be, considering PF is not as rare as we may think.