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How fast does this progress?
My ILD is progressing way too fast. In a matter of 6 months I went from almost normal, only go out of breath when going up hill to not able to walk a few feet breathing heavy and loosing oxygen level below 90.
is this normal?what causes breathlessness, is it fibrosis or inflammation?
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15 Replies
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Hi Kris,
Thanks for writing to us, though sorry to hear it sounds like your fibrosis is progressing rapidly. Make sure you let your doctors know about the 02 saturation falling below 90 so they can get some supplemental oxygen in place for you, as hard as that is to accept, it’s important for your body to be getting adequate oxygen.
Even after several years, I have a hard time understanding the cause of breathlessness. A rehab specialist once told me that “breathing is multi-factorial” so I always think of that, meaning there are likely lots of factors that cause breathlessness. Are you able to speak with your doctors to better understand this? It’s a complex topic…. sorry I don’t have a good answer for you.
Char. -
It can be either. Depending on your particular disease, fibrosis thickens the walls around the air sacs and makes them less permeable to oxygen transfer.
It can also be due to inflammation/congestion. Back in the Fall I started having dyspnea (shortness of breath) and just simple exertion dropped my saturation to 88%. I had a lot of congestion/crackling in my lungs though, which seems to have cleared up in the past 3-4 months and I’ve been taking Symbicort daily to reduce inflammation. My saturation has improved to the 95-97% range, depending on what I’m doing.
I also started doing deep breathing exercises to improve lung condition/fitness, which I feel also helps with O2 saturation.
I will be starting OFEV this week which hopefully will help keep things stable and minimize exacerbations in the future.
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Hi Patrick, I’m starting OFEV next week I believe. I understand it really helps some of us a lot.
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Thanks Charlene and Patrick. I am taking Prednasone for inflammation a steroid. Is Symbicort a steroid. Is it better than Prednasone?
yesterday my doctor prescribed Ofev. I am going for a second opinion on Monday.thanks
Kris
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Symbicort is an inhaled corticosteroid. I took it for years (decades?) when a persistent cough developed after a viral infection until the cough stopped.
There are something like 200+ types of ILD. Prednisone is used for certain types and/or certain situations including (I think) acute inflammation.
Like most of us, I’m not a doctor, but require a lot of medical information to understand what is going on with my lungs. I’ve developed an appreciation for all the training required to become a doctor. There are a lot of patients with complicated issues that must prove to be quite a balancing act for physicians.
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Thanks Patrick for that valuable info. I sure understand that you are not a doctor but you have gained knowledge and sharing it is valuable with honesty and openness.
God bless?
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Yes, both are steroids but with different uses and different methods of consumption. I used to be on symbicort but couldn’t take the turbuhaler anymore, it took too much of a deep breath which I can’t do so my inhaler was switched. Prednisone, as I understand it, is used to control more acute events like a flare up from a virus where as an inhaled steroid like symbicort is to be used more longterm.
Take care,
Char. -
I just started amonth ago…hoping for good results
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I forgot to mention that I do have supplemental oxygen.
Another question:can being around a dog cause inflammation? In the past week my daughters dog is with us
Kris
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Hi Kris,
I can’t say for sure, but when I was being worked up for a lung disease, my doctor did ask about whether or not I had a dog or cat. I have both and I know the cat’s litterbox can be damaging to our lungs but I think my doctor was asking about the dog to rule out allergies; I don’t think its been connected to my IPF diagnosis at all. I would have had the disease before getting the dog, but I suppose if you have any possibility of allergies, that could cause an increase in inflammation. Something to consider I guess…
Char.
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Everyone is different, Do the pursed lip breathing exercises to get rid of CO2 build up, the CO2 can cause more breathlessness. Join the 1st class medical forum group lots of good info there.
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I used to have cats and both my adult children have dogs or cats. I do not have any animals now. When having tests to determine which ILD I had it was discovered that I am highly allergic to dogs and cats. So with having lungs issues I decided not to have any animals in my home. Hope this helps.
Marianne
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In addition to ILD, also have severe osteoporosis to the point that I recently had a compression fracture of T6/7, causing me to hunch over and severely compromising respiratory capacity. Am on a low dose oxycodone every 6 hours (which I do take) but any exertion causes pulse ox to drop although I do recover.
Had an epidural for the nerve pain from the fracture which has helped (Yay! No pain after 3 months) but also realize the postural problem is a major problem. May be time to move to Hospice from Palliative Care.
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I was diagnosed in June of 2021 after having infectious pneumonia. The doctors had nothing to offer as to what kind of infection I had. Was it triggered by a R A infusion or COVID-19 they suggested. I still don’t know. Next week I have testing. I don’t understand what for. I am 67 have new grandkids and a busy life with a wonderful husband of 40 years. I’m so scared. Anyone have comforting information as to what I should expect. Thank you so much.
Patti-
You will probably have a PFT (pulmonary function test) which determines your lung capacity as a %.
Anything above 70% is generally good. The test is performed at regular intervals to determine if you are stable or if you may require medication.
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