-
Confused and scared
Hello,
I recently had a chest CT without contrast and it showed bibasilar pulmonary fibrosis. I had been sick for a month with what appeared to be bronchitis. I was on three different antibiotics and three rounds of steroids. Finally the last antibiotic cleared my up. It was levaquin, a shot of rocephin and the third round of antibiotics.
So here’s the kicker……the chest CT was done on June 15. The doctors office called me on July 24 to give me the results over the phone. “Bibasilar pulmonary fibrosis”. It also said bibasilar fibrotic type changes.
My doctor added a note at the bottom of the results paper that said “no lung nodules but does have some damage from smoking in the lower lung fields”
This is a new doctor for me as we recently moved from New Hampshire back to Texas.
There was no appointment made fir me to come in and get the results in person from the doctor and no pulmonologist referral. I called back the next day and spoke to the same nurse that called me with these results and asked her if I should see a pulmonologist and she said the doctor didn’t seem very concerned about it but she would send a retro a pulmonologist group in the area.
Is this normal? Do they not care or think it’s not worth it because I did the damage to myself from smoking or just are not educated enough to know how serious this is.
I have been in turmoil for a week now. I did call and find a pulmonologist myself that I go to on Monday but I am scared to death.
I have two children and three grandchildren. I’m 55 years old and I don’t know what to do.
I’m an absolute nervous wreck.Any information from anyone here would help a great deal.
Thanks so much,
Amy
-
5 Replies
-
Hi Amy,
sorry too hear about the tough time you are going through just now.
I am 54 and have recently gone through my own diagnosis of PF so the initial worry and concern that I had is still very prominent in my mind so I am mindful of how much of a shock it can be.
It can be both daunting and overwhelming to receive any kind of diagnosis and especially if you received that news through quite an impersonal way as you are not in a position to then ask questions.
It doesn’t always help that online searches (that we likely all do) can then bring up horror stories and often inaccurate information and out of date statistics.It then easy to assume that everything you read is factual and associated with how you are feeling.
Not an expert by any means but my understanding of the disease you mention is the following.
Bibasilar fibrosis is a type of pulmonary fibrosis that affects the lower parts of the lungs, known as the bibasilar regions. It is a chronic and progressive condition that causes scarring and thickening of the lung tissue, making it difficult to breathe. Bibasilar fibrosis can be caused by a variety of factors, including:- Exposure to environmental toxins, such as asbestos or silica dust
- Autoimmune disorders, such as rheumatoid arthritis or lupus
- Infections, such as pneumonia or tuberculosis
- Idiopathic causes, meaning the cause is unknown
I think it is good that you have sought a consultation with a pulmonologist even if you did have to do this yourself and hopefully they will be able to give you a clearer picture of what’s going on. Monday isn’t too far away. My advice for what it’s worth would be to take someone with you as it is very easy to be overwhelmed by facts and information only to forget or not quite be sure what the consultant said afterward, I have definitely been in that situation and I am sure I wouldn’t be alone. It can also be helpful to write down questions you want to ask as remembering things can go out the window when faced with a situation you are already going to be worried about.
It may be that the current doctor really isn’t aware of the disease, we like to think doctors will know everything about everything when the reality is very different.
It is really easy for me to say try not to worry but my advice is not to look up things online, enjoy the rest of the week as best you can, and see what Monday brings. Whatever the outcome you will be far better informed.
Sorry I can’t be more help
My thoughts
Scott
-
Hi Amy, I was diagnosed with IPF a few months ago. I had been to a pulmonologist because of shortness of breath. She sent me for a ct and that’s when I found out. The nurse was also the one that called me to tell me I had this disease. I also thought they should have had me come in to discuss my options. I have been back to this dr several times since the diagnosis and have not seen the dr just her PA. I am going to change dr as of this month. I am on OFEV and so far I’m doing ok and not any severe side effects. Hopefully this new dr will do another ct scan to see how things are going.
Praying you get better news from the pulmonologist.
Charlene Schiller -
Hi Amy, Everyone feels very confused and scared at diagnosis. It’s for sure something to be concerned about and your Dr. did you a favor as he doesn’t sound very educated about PF. I’m glad you got in so quickly to see a Pulmonologist! Ask up front how familiar he is with PF (not all pulmonologists are) and ask him to refer you to a Care Center of Excellence. There are at least two in the Houston area.
Go to the Pulmonary Fibrosis Foundation website at pulmonary fibrosis.org and there is all kinds of good information. On there you should be able to download a sheet that has wuslestions to ask your Pulmonologist. Also on their webpage you may find a support group in your area. That’s a good place to get education and/or firsthand knowledge from patients just like you who are also on this journey.
I wish you the best!
-
Hi scared and confused.
This a a scary diagnosis. At first I thought the pulmonologist just didn’t really care. Unfortunately, there isn’t very much that they can do. The two antifibrotics May help slow down the progression.
I’ve had two years since the diagnosis and am on 4 lpm oxygen 24/7. I can still do a lot of things that I want to. I stay away from extreme heat and cold.
Yes, the steroid nose spray is irritating, same for cough but nothing worse than when I’ve had a cold. It just doesn’t go away.
I have to accept that this is how it is. Oxygen helps me feel better. So do my hearing aids and glasses. I try to explain that my lungs are scarred and less flexible. It’s no worse than heat disease. Just as unpredictable.
We’re all advised to drink water, eat healthy foods, and get plenty of sleep.
Most people take breathing for granted. We don’t.
Try go get the most out of life that you can.
If you get short of breath, contact the pulmonologist. Otherwise just live your new life.M
-
I know how you feel. Your story is very similar to mine. I developed bronchitis in October of 2021 that took 3 rounds of antibiotics to clear. Further more they put me on a breathing machine using albuterol; my daughter who is a pediatrician, was with me one day when I took a breathing treatment; at the end she noticed I was still wheezing and told me to take another treatment. I ended up taking 4 treatments and I was still wheezing. At which point she told me I had something more serious than bronchitis and I needed to see a pulmonologist.
It took me 3 months to get into see a pulmonologist and another month to get all the test results.
Between the time I got the diagnosis and I talked to the pulmonologist I did a lot of research and came to the conclusion I would probably be prescribed OFEV. I am on Medicare so for me it is somewhat affordable.
So if you can get on OFEV do it right away. Also, without any mention whatsoever from the doctor I learned that there are a number of breathing rehabilitation programs that are generally covered by insurance and Medicare. I got my doctor to recommend a breathing rehabilitation program and signed up for it.
I am doing quite well. The OFEV eliminated a bronchitis problem that I had suffered with for 50 years. I am not on any form of oxygen. I still can walk 2-3 miles, drive, fly, travel, and continue a normal life.
Join the Pulmonary Fibrosis Warriors — they are probably the most knowledgable group of people (including doctors) about IPF. Most doctors, including pulmonologist, know very little about IPF. Pulmonary Fibrosis Warriors have developed some ties to pulmonologist that are truly knowledgable about IPF.
I see you now live in Texas. I live in Houston. If you want to give me a call at 713-702-1808.
And finely -DO NOT GIVE UP HOPE.
-
Hi Amy,
Having a diagnosis of any type of PF is like being on a roller coaster emotionally. My experience is similar up to the point that I admitted myself to a hospital through the emergency room ; here in greater Phoenix. Once there I had access to the staff pulmonologist who managed the interstitial pneumonia while in the hospital. I learned quickly however that the average pulmonologist has no idea how to diagnose any underlying cause or the disease, itself.
My advice is to find the closest center of excellence for PF and if one is not close, I have seen some information that indicated that some offer remote appointments for diagnosis and care.
Spend some time on line and review places like Cleveland Clinic who offer virtual visits.
Stay as calm as possible given PF is scary but more importantly, stay engaged
Good wishes
Steve
-
Good day, I was recently diagnosed with IPF. All situations are different and I strongly suggest that you see a pulminoligist. It has made a world of difference to me knowing exactly what I was up against. Fev1 is 67. Also going to have surgery next month to help fix a paralyzed diaphragm issues. My new philosophy is Don’t count days make days count.
-
I’m not sure where you are in Texas, but a Center of Excellence as others have mentioned is the way to go. Houston area has them, and in the Dallas area UTSW or Baylor, Dallas.
PF Warriors support group is excellent, online zoom meetings and FB confidential posts.
🙏❤️✝️
Log in to reply.