March 29, 2018 at 9:08 pm #11587AnonymousInactive
It is very difficult to explain to people what makes IPF different from the more common diseases such as COPD, emphysema, Intersitial lung diseases, and other cronic respiratory illnesses. While wearing the “awareness” bracelets and at other times people ask. And other than a physical description of what happens in the lungs (usually not well understood unless you have read up on it) it’s hard to describe….any advice?
April 1, 2018 at 1:56 pm #11588
This is an excellent discussion topic! Thank you for posting it, and I’d love to hear from others about their “elevator” speech for what IPF is when others ask.
You’re very right about the physical condition of IPF lungs not being well understood by the general public, nor do many people find it interesting. So many people have heard about COPD or other diseases that cause breathing difficulties, like asthma or CF. When wearing my oxygen, I have so many people ask me if I have CF and I have to clarify what IPF is and I get, “oh I’ve never heard of that”. Hard to hear when it consumes so much of our lives…
What I usually say is “IPF is a progressively fatal lung disease (without a transplant), which will eventually prevent me from being able to breathe”. Usually if people feel this answer is sufficient for their understanding, they stop and don’t ask any more questions. However, if people want to know more they ask and then I explain it a bit more thoroughly. The sentence above is just my quick, 1-sentence answer to people asking what IPF is.
Another thing I like to share when people say they haven’t heard of IPF is that it is as common as breast cancer in the US. There are as many people living with IPF/PF as there are breast cancer, which is so hard to believe based on the lack of awareness for IPF. Usually then conversation leads into how I got it (idiopathic), early symptoms, etc.
It is hard though, I agree and I’d love to find out more about people’s quick and easy “elevator speech” when describing IPF. I am going to ask this on our social media pages, and will post people’s replies below Susan. Hopefully some of them help you, and I’ll ask how people help others understand the difference between IPF and other common lung diseases, as you mention above 🙂
Thanks for contributing such a great discussion topic!
April 6, 2018 at 12:19 pm #11664
Although I was diagnosed in 2015 with Interstitial Lung Disease it is just recently that I have been diagnosed with a type. So up until December I was basically just living my life getting HR CT scans yearly and PFT every 6 months and was stable. May 2017 to November 2017 I had a 30% decline in my lung function.. Up until this point I didn’t even really think about it or know that it was life threatening (I prefer life threatening to terminal or fatal). This all being said, my local Pulmonary dr has diagnosed me with IPF. I went up to Seattle last month and saw a ILD specialist at the University of Washington Medical Center’s Interstitial Lung Disease Clinic. He does not believe I have IPF but rather and auto immune related NSIP (non specific interstitial pneumonia). Regardless NSIP, PF, IPF are all types of ILD. They all behave in roughly the same way. The difference is how to treat it and sometimes how fast it progresses..
I haven’t really come up with a short and sweet way to explain to people. Mostly I just say I have ILD. It is a life threatening, progressive, lung disease with no cure and little treatment. If they have more questions I explain the best I can (like I did above). Most people try to compare it to COPD. Although COPD affects the alveoli similarly to ILD, COPD is an obstructive disease meaning it affects how much air you can push out or expel where as ILD is a restrictive disease and affects how much air you can bring in.
I am still trying to learn to explain things in a way that is quick and easy to understand and doesn’t make other people uncomfortable. Like I said this is pretty fresh and new to me still so I am learning too.
April 6, 2018 at 2:41 pm #11665gilParticipant
Depending on person asking, I usually explain it in one of two ways:
1. It means my lungs are damaged and the illness will get worse until my lungs won’t work at all. Doctors don’t know what cause it nor how to cure it; yet. Doctors said I had about three good years (meaning very little change) and two years of rapid decline. That was seven years ago and I am way past that, thank God.
2. It means that for unknown reasons I have scarring of the lungs and the illness gets progressively worse, there is no cure. The average life expectancy is 3 – 5 years, I am going on 7 years. Science will eventually find a cure and it won’t surprise me if this happens in my lifetime.
In my experience, the above answer is enough explanation. If people ask questions I answer and do my best to separate the science from opinion.
April 7, 2018 at 8:59 am #11668
Thanks so much for taking the time to reply to Susan’s question. I hope she finds it helpful, as I did as well and appreciate hearing how everyone describes their IPF/ILD to others who are asking.
How do you determine which person ‘warrants’ which reply? I couldn’t think of a better word than that which is why I put it in quotes, but basically, how do you know which way to describe your IPF when someone asks? I really like both answers, and love that you throw in that you are past the prognosis date/expectancy. Today marks my 2 year diagnosis date (April 7th, 2016) not quite sure how I feel about it, but reading that you’ve reached 7 really gives me hope.
Thank you for sharing.
I’m really glad to hear from you on here, I’ve been thinking of you and hoping you’re doing well 🙂
April 7, 2018 at 8:51 am #11667
Thank you so much for your response, I am sure Susan will find it helpful as I did. I just had a couple questions for you, that I hope you don’t mind my asking? 🙂
When you had the 30% decline in lung function, was it because of anything specific (ie. a virus, pneumonia) or did they attribute it to the progression of your ILD? My friend’s Mom actually was randomly diagnosed with NSIP in December of 2016 and was really not doing well, however, she has since rallied. She was told she needed to lose weight before even being evaluated by our transplant team here (very common) and she did … she always kicks my butt in steps on our Fitbit… and was seen by the transplant team in January of this year. Her NSIP has actually significantly improved and they are holding off on transplant until further notice. It’s so interesting how our lungs work, and I wonder if this improvement means her lung function increased?
Your description of COPD vs an ILD was really helpful to me! I hadn’t looked up a lot on COPD as I knew this isn’t what I had, but just the fact that it is about how much air you can expel, vs. an ILD being how much you can bring in, is helpful when people ask how my IPF compares to COPD. Thanks so much for this!
April 8, 2018 at 6:30 pm #11688
They aren’t sure what caused the decline but they do suspect it may have to do with my sinuses. I explained in a previous post somewhere about how last summer I started smelling a random “yeast bread” smell and had to have sinus surgery in December. When they did my surgery I has Fungal balls in my sinuses, the fungal balls were Aspergillus ( a common mold). Your nose is the pathway to your lungs so I know my Dr. is seriously looking at this as a possible contributor. Thank you for mentioning about your friends mom who has NSIP and that she is doing so much better. My dr told me the same thing at my last appointment. He said we aren’t going to talk about lung transplant because I do not qualify because of my weight. I need to loose a minimum of 30 pounds which is why I am so focused on diet and exercise.
Hearing how well your friend is gives me so much hope!
April 11, 2018 at 8:36 pm #11740
Thanks as always for your reply 🙂
I remember you sharing about your sinus surgery, and I suppose if they are a direct route to your lungs then this would certainly make sense as a cause to your declining lung function. You learn something new everyday, although I wish it wasn’t from our own health experiences that we are learning from.
I am always interested in hearing the many different causes of lung declines, as there seems to be many based on the experiences of people on these forums, as well as those I know through the PF community at my local treatment centre. The amount of things that can cause a rapid decline, such as an exacerbation terrifies me but I try not to let myself get carried away with those thoughts. Thank you again for sharing!
Yes, she is doing amazing and lost so much weight simply by walking! She walks like 6 hours per day (she is retired, and can really commit to this) and looks awesome. I am going to send you a private message back, because I want to hear how the first week is going on the reduce calories. Chat soon!
April 13, 2018 at 4:46 am #11768
I was surprised to see IPF described as an aerodigestive disorder. There seems to be quite a lot of evidence that GERD is one likely cause. In my case I am almost certain that it is the cause and now my GERD is being treated I am not sure if I need to continue with Ofev. I am 78 and live in the UK.
I have been diagnosed as having absent contractility (non functioning lower oesophagal sphincter) and no peristalsis and this is the cause of my GERD. I have been told surgery is not an option.
I take the maximum dose of Lansoprazole and Ranitidine. I eat only small meals, minimise coffee and alcohol, don’t wear tight clothing and sleep with my shoulders elevated. If possible I don’t eat or drink within 3 hours of going to bed. My FVC is 95% to 105% but I get breathless on exercise.
I no longer get heartburn, or post nasal drip so the acid reflux must be under some degree of control but I still need to clear my throat all the time so my Larynx/Pharinx must still be affected.
My inclination is not to stop the Ofev but if my lung function is still as good in a couple of years I may do so. It is a pity there is no accurate way to measure the progression of IPF.
I realize I am very lucky to have a diagnosis and treatment and I well know that most people who have IPF have a much harder time than I do. I make this posting in the hope that somebody might get benefit from treating their GERD.
love and best wishes to all
April 13, 2018 at 7:01 pm #11801
Thank you so much for taking the time to write and reply to this thread. I found your post incredibly interesting and helpful, so at the very least you have helped me (and I am confident many others as well) and I appreciate that.
I’ve never really talked to my doctor about GERD being a cause of my IPF, as this isn’t something I knowingly suffer from. Sometimes I have weird symptoms and when I look them up, many of the explanations point to GERD. My Mom really struggles with this as well, so sometimes I can relate her symptoms with mine although I didn’t know it was directly linked to IPF. Do you know of any literature that makes this link? If so I’d love to share it with others simply to increase the awareness of this link.
Have you been living with GERD long? Your FVC numbers are excellent, which is amazing and I am happy to hear this for you! What about OFEV, how long have you been on this medication? I am on it as well and don’t experience many side effects, do you? Sorry for all the questions, just thankful for your post and find it very interesting.
Appreciate your willingness to share Brian and look forward to getting to know more through the PF forum.
April 13, 2018 at 9:48 pm #11807
Just finished with 2 days of test and it turns out I have GERD and silent reflux. I will be having surgery to correct it. I am not sure when. What I do know is my wonderful dr suspected I had silent reflux/GERD because he finds it very common with ILD. It is definitely something worth looking into. Apparently you gan have it without being symptomatic.
April 14, 2018 at 8:44 am #11808
Hello my friend Aishia,
Thanks for sharing this update, although I am sad to hear you are requiring surgery! Your doctor really does sound amazing from everything you have shared with me, and so thorough which is wonderful. Were these tests standard/routine, based on your doctor suspecting you might have it due to your ILD? I will ask about this next time I see my lung specialist, as I am not symptomatic but your sharing that I could have it without the symptoms is good knowledge for me. Knowledge is power!
Thanks again Aishia and I hope you are doing well 🙂
April 15, 2018 at 7:46 am #11812
It is important to note that reflux can cause IPF and other lung problems but it is not the only cause. I think it would be true to say that reflux could aggravate IPF. Stomach acid, digestive enzymes and bile can be aspirated in the form of small droplets and damage the lungs if the lower esophageal sphincter is not working properly.
I have probably had undiagnosed reflux for at least 15 years and it has gradually been getting worse over this time. I was diagnosed with IPF about 2 years ago and I have been on Ofev for 18 months. I do have some digestive problems but I am not sure if they are caused by the Ofev or not. I am just learning to control my digestive symptoms by eating oats and oat bran for breakfast and drinking lots of water and a mainly vegetable and fruit diet.
The reflux was diagnosed a little after the IPF and now it is being treated I have minimal symptoms but the lifestyle changes have been quite severe but well worth it. I gave 6 pairs of perfectly good trousers to the charity shop and bought a set of looser ones. Silly thing but it has made a difference.
GERD can cause all kinds of problems and in my experience it is under diagnosed buy the medical profession. I think we should all be looking out for GERD symptoms and making the necessary lifestyle changes. I found that taking antacids had a dramatic effect within two days so it was a very useful diagnostic.
As an aside I recently went to an Ayruvedic treatment holiday in India. I had treatments and diet prescribed by a very good Ayruvedic doctor who was also medically qualified. I had personal sessions form a Yoga instructor at 5:30 am on the side of a beautiful lake as the sun came up. Mostly total mumbo jumbo but I did enjoy it and felt much better afterwards. I put it down to sensible diet and learning deep relaxation.
Love to all
April 15, 2018 at 11:04 am #11822
Thank you so much for your reply and yes, all good things to note re: acid reflux and IPF. I think many patients, like myself, forget about the correlation/link between these two. When you mention that you think you’ve had reflux for 15 years, would you say you were always symptomatic of it? Just curious as this is something I’d like to watch out for. I know Aishia said she wasn’t symptomatic, so the more knowledge I have regarding it, the better I think. Hopefully my question is helpful for other IPF patients wondering as well!
It is also helpful to hear of your lifestyle changes as well, and for the most part most people benefit from a few pounds of extra weight loss. If anything, it wouldn’t exacerbate or worsen the disease so the lifestyle adjustments to control the reflux, that also have weight loss associated with it is also a benefit. Thanks for sharing!
Yoga is also something that is on my radar to try: another one of those things that if a patient can participate, it isn’t likely to worsen anything. I’ve never tried it before and am a bit nervous given my oxygen needs, but I hope with a qualified instructor I’ll be able to manage. Yoga lakeside at sunrise sure sounds like bliss to me!
Best wishes to you and again, thanks so much for sharing.
April 15, 2018 at 8:15 pm #11826AnonymousInactive
Run, don’t walk….buy a wedge pillow that raises your upper body while you recline….the bottom of the pillow sits at waist level and the top is 5+ inches above the bed, they are sold online….they are a great solution for GERD – they keep the acid where it belongs (below the chest level). We and others we know find that this is a wonderful solution to acid coming up into territories where it does not belong…also papaya (chewable tablets) is a natural acid reducer (without chemicals) that, if taken after a meal (hopefully loooong before you go to lie down) works wonders.
April 16, 2018 at 7:18 am #11827
Thank you so much for sharing your wisdom of managing acid reflux and GERD symptoms. They will helpful for me, and I am confident will be of interest to others reading this forum as well 🙂
I’ve heard lots of good things about these wedge pillows, and think I should start looking for one online!
Thanks again for sharing Susan.
April 17, 2018 at 10:04 am #11854
During the 15 +years I had reflux the main symptom was post nasal drip. Runny or blocked nose, crackly voice, sore throat and the need to clear the throat. I was prescribed nasal sprays, salt washes etc. which did help a bit.
It was when I was diagnosed with IPF that I decided to seek Laser treatment for the post nasal drip because I thought it would be nice to get that fixed if I was going to have worsening breathing problems. Surprise surprise the ENT specialist said it was reflux and prescribed Lansoprazole. Within 2 days the symptoms largely went away though I still have the throat clearing problem.
The post nasal drip must have been caused by micro droplets of refluxate. It seems highly plausible that the same micro droplets were being inhaled and caused my IPF.
My lung function deteriorated slowly up to that time but has not changed since I started treatment with Lansoprazole though I am also on Ofev so that does not prove anything.
I hope this helps somebody though I would hate to raise false hopes.
April 18, 2018 at 10:46 am #11887
Thank you again for taking the time to post such a thorough reply. I know others will benefit from reading your comments, as I have 🙂
I will definitely be mindful of these symptoms in the event we can eventually determine they are reflux as opposed to a virus of some kind. I often have these side effects (although not constant, sometimes they subside) and wonder if it could be something else as opposed to always have a cold. Good to know!
So, it sounds like your doctor thinks there is a direct correlation then between reflux and IPF? Did you see the study I posted about the treatment of GERD significantly lowers IPF-related mortality? I found it after I did a search for more information about GERD/reflux and IPF. I certainly found it interesting and it is a new publication. Have a read through it, you might find it interesting 🙂
Thanks again for sharing and chat with you soon,
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