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How do you explain your disease to the uninitiated?
Sooner or later we have to explain to people why: 1) we're taking our own water to the restaurant, 2) we can't enjoy their new jacuzzi, 3) we'd prefer to eat early in the evening and have to be home earlier to do our airway clearance 4) we can't sit on the patio because of the mister, 5) we need to wear a mask if it's windy outside, etc etc etc.
I'd like to be able to tell folks who ask about my bronchiectasis and NTM infection without having their eyes glaze over. Some people (like family and close friends) may want the long explanation, but for everyone else I'd like a very short and precise down-and-dirty few words.
What are all of you saying out there about your health problems?
Thanks!
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Unfortunately the add for Brinsupri has caused a few friends who know I have bronchiectasis to ask me if the condition is really that horrible. I explain that, like many conditions, there are mild to severe cases and mine remains mild. Some advertisers have a tendency towards using scare tactics to sell their product.
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2 Reactions@snoei I am a HUGE proponent of banning all drug advertising, both for this reason and because it is driving huge cost increases in medical care when patients demand the new meds without even trying the "old standby" products that may be just as effective and at far lower cost.
Brinsupri ads have raised awareness of the condition, but without really educating...
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8 Reactions@lilianna I also tell people that I have a rare and chronic lung disease that is not contagious.
For closer friends/family I may explain more about taking care of myself by doing airway clearance and a breathing treatment using a nebulizer 2x day. For a few, I share what a great pulmonologist said to me: that I will die w it but not from it! (I’m 82 and was dx w Bronchiectasis/NTM 11 years ago but probably had it 10 years bf I was dx).
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7 ReactionsYes, it's difficult trying to explain our condition to others. I just tell them I have a chronic lung condition that prohibits my doing most of those things. I don't know about anyone else, but I also have the issue of asking people, I'm going to be around not to wear perfumes or cologne's. Sometimes people are confused, looking at me, I look very healthy.
@vstankie I don’t understand. Best, Jessed
I just say that I have breathing problems. Most people don't care about the details.
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1 ReactionFor me, it’s hard to explain because there are things I don’t understand myself.
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1 ReactionI am new to this group. I was diagnosed with BE after a CT for an abdominal issue revealed it. I was told it was mild and was never told to take any precautions ( except to make sure to stay UTD on my vaccines) and never told about airway clearing techniques. Now, 7 years later, I have a worsening cough, night sweats, chest pressure, and shortness of breath with physical activities. A new CT scan showed progression of the BE and was suggestive of a MAC infection. I asked my pulmonologist for a PEP device. I also requested hypertonic saline and nebulizer to help loosen my sputum so that I can successfully bring it up for a culture. I requested a bronchodilator and was told it wasn’t necessary. I have not been given any cautions about drinking water, hot tubs, etc. What should I know?
I do not have any confidence in my pulmonologist and I’m trying to get my PCP to refer me to a NTM and BE center.
Thanks in advance for any advice.
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1 Reaction@raintylerI'm so sorry to hear that the lack of care you've been receiving has caused your health to deteriorate. It's happened to many of us of this forum. I strongly recommend you see someone who specializes in bronchiectasis and NTM. There may not be such a person in your community or even your state so you may need to travel. If at all possible I suggest National Jewish Health in Denver. They are the leading experts. People from literally all over the world with respiratory problems find their way to NJH. But going there can be expensive considering that the first visit will be a week or more long. (Though there are ways to do it without spending too much.) In that time, however, you will get exemplary care and learn everything you need to know about your disease and how to treat it. You do not need a referral to be seen there. If interested, there is lots of info on this forum about what goes on there, where to stay, etc.
If you can't make that trip there are other institutions around the country, called respiratory Centers of Excellence, that treat NTM and bronchiectasis. You can search this site for something near you. Or let us know where you live and someone on the forum can help you out.
Wishing you good health and the best of luck!
@raintyler I'd say you are on the right track when you say "I’m trying to get my PCP to refer me to a NTM and BE center..."
It can be difficult to find the right docs - Bronchiectasis occurs rarely compared to COPD or asthma, so a generalist pulmonologist rarely sees it. Where generally are you located? Maybe someone here knows a "hidden gem" near you that doesn't require travel.
Here is a really good video about living with Bronchiectasis:
https://www.youtube.com/watch