Asthma and Interstitial lung disease

Posted by jmb73 @jmb73, Mar 15, 2020

I just had a pulmonary function test and it showed that my asthma was worse and my COPD is actually ILD. An ex-ray for bronchitis showed prominent markings for ILD. I am on a nebulizer to be used in the am and every 6 hours as necessary. With the Corona virus and having AFIB. PVC’s, Sjogrens, plus severe arthritis, a meningioma, fibromyalgia etc. I am afraid to go out. My lung doc said the ILD is caused by Sjogrens. Is there anyone on this group who has ILD and are you on any treatment. I am getting out of breath more often. I am 75. I will have a HRCT in May and see my lung doc the end of May to see how bad it is. I have looked on Google and it really scares me. I have to wait to May as they want my asthma under control before I have the HRCT. Thanks for your help.

@jmb73 It's always frightening to have a diagnosis like ILD – something most of us have probably never heard of. That's how I felt when I learned about having bronchiectasis plus pseudomonas and MAC. I was so happy to join Mayo Connect and find others with the same conditions and learn how to manage.
I just went and read the links Merry provided, and it was a lot like reading about bronchiectasis. It is serious, and may be progressive. With bronchiectasis, I choose to call it a life sentence, something to be lived with, not a death sentence.
I see that you are under the care of a doctor who has a plan for you. The Breo is your long-term anti-inflammatory. The nebulizer is your day-to-day controller to be used up to 4 nebs per day, even if you don't feel the need in the moment. The rescue inhaler is meant to be just that – when the other two regularly used together are not enough.
So given all that is going on in your life, what can you do to help yourself?
First, use your meds as prescribed. All of them, to help your breathing, your blood pressure and AFIB, arthritis, etc. If you are being seen by several different specialists, make sure one doc or a pharmacist looks at all of your meds, prescription and other, to make sure they are not "fighting" with one another.
Next, find something positive in each day – as simple as the sun coming in the window, a hot cup of tea, a little piece of good chocolate. Look here for ideas: https://connect.mayoclinic.org/discussion/visual-escapes-and-daily-inspirations-share-yours/
Finally, turn off the endless stream of bad news and pamper yourself in a small way to relax – a warm bath or shower, a walk around the yard to see what's coming up, music…
I'll be back soon to see how you're doing.
Sue

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@sueinmn

@jmb73 It's always frightening to have a diagnosis like ILD – something most of us have probably never heard of. That's how I felt when I learned about having bronchiectasis plus pseudomonas and MAC. I was so happy to join Mayo Connect and find others with the same conditions and learn how to manage.
I just went and read the links Merry provided, and it was a lot like reading about bronchiectasis. It is serious, and may be progressive. With bronchiectasis, I choose to call it a life sentence, something to be lived with, not a death sentence.
I see that you are under the care of a doctor who has a plan for you. The Breo is your long-term anti-inflammatory. The nebulizer is your day-to-day controller to be used up to 4 nebs per day, even if you don't feel the need in the moment. The rescue inhaler is meant to be just that – when the other two regularly used together are not enough.
So given all that is going on in your life, what can you do to help yourself?
First, use your meds as prescribed. All of them, to help your breathing, your blood pressure and AFIB, arthritis, etc. If you are being seen by several different specialists, make sure one doc or a pharmacist looks at all of your meds, prescription and other, to make sure they are not "fighting" with one another.
Next, find something positive in each day – as simple as the sun coming in the window, a hot cup of tea, a little piece of good chocolate. Look here for ideas: https://connect.mayoclinic.org/discussion/visual-escapes-and-daily-inspirations-share-yours/
Finally, turn off the endless stream of bad news and pamper yourself in a small way to relax – a warm bath or shower, a walk around the yard to see what's coming up, music…
I'll be back soon to see how you're doing.
Sue

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Hi Sue, Thank you for your support. I am taking the nebulizer every day and it's helping. My family gave me an apple watch for Christmas and my cardiologist said it will show if my heart rate goes too high and I get an AFIB episode. If that happens, I am to take an extra metopropol and it should lower the heart rate. I had a "phone" appointment with him and he reassured me as I was very concerned about going to the hospital if my rate goes too high. My kids have been super and my "unemployed" son and his family walk over to see my husband and I every morning . We stay in the garage and tell the kids (2 &3) we are sick so they play in the driveway and don't come near us. They don't stay long but it really helps. I realize that I am very lucky to have a great family and will practice my yoga breathing when I get depressed. My rheumatologist told me he can't help me as all of his medications will lower my already low immune system. So I have one less doctor to see. Unfortunately, I no longer can take NSAIDS and I am in constant pain. I am going to increase my CBD/THC as I know the pain is causing me to be depressed. It's frustrating but I will keep listing all the good things I have and try to get rid of the negativity. Thank you for your help. Stay safe.

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@jmb73

Hi Sue, Thank you for your support. I am taking the nebulizer every day and it's helping. My family gave me an apple watch for Christmas and my cardiologist said it will show if my heart rate goes too high and I get an AFIB episode. If that happens, I am to take an extra metopropol and it should lower the heart rate. I had a "phone" appointment with him and he reassured me as I was very concerned about going to the hospital if my rate goes too high. My kids have been super and my "unemployed" son and his family walk over to see my husband and I every morning . We stay in the garage and tell the kids (2 &3) we are sick so they play in the driveway and don't come near us. They don't stay long but it really helps. I realize that I am very lucky to have a great family and will practice my yoga breathing when I get depressed. My rheumatologist told me he can't help me as all of his medications will lower my already low immune system. So I have one less doctor to see. Unfortunately, I no longer can take NSAIDS and I am in constant pain. I am going to increase my CBD/THC as I know the pain is causing me to be depressed. It's frustrating but I will keep listing all the good things I have and try to get rid of the negativity. Thank you for your help. Stay safe.

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@jmb73 I am glad you are figuring out some coping mechanisms.
I too had to stop all NSAIDS some time ago and understand your struggle with pain – does your yoga breathing help with that at all? Also, there are some NSAID topical gels available by prescription that some rheumatologists use (Piroxicam and Diclofenac are 2) – maybe you can ask about those – they help me some on really bad days.
It might help to put a name to the awful feelings we are all dealing with right now – Ginger posted this on another discussion last night, maybe it will help you too. https://connect.mayoclinic.org/discussion/a-new-kind-of-grief-in-these-times/?pg=1#comment-384115
Hang in there, and check in with us from time to time – it is so unfortunate to get a scary diagnosis at the same time as our world is turned upside down by this virus.
Enjoy your family – my grands are near the same age – my daughter takes little video clips for us every day, of silly things or cute – we watch them over and over to feel better. Your son sounds very thoughtful – maybe he would do the same if you ask?
Stay calm, stay safe
Sue

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