Masks are just not masks

Posted by Merry, Volunteer Mentor @merpreb, Apr 8 8:45am

I know I know you are sick and tired of hearing about masks. So am I so I watched a new Mayo video about just this and I was fascinated. Indeed, masks are just not maks, they help guide our behaviors too! Are you being good about how you handle and wear your masks? What material is your mask made of?
https://www.youtube.com/watch?v=09CFGoFtYeU&feature=em-uploademail

@merpreb Thanks for posting that video, Merry. Great information. I just posted it on my personal FB page. I'm sure it will be helpful to lots of my friends.

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Hi this is Teammayo1. Great Video. Thanks I too will pass it along.

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@teammayo1

Hi this is Teammayo1. Great Video. Thanks I too will pass it along.

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Hello @teammayo1
As I see this is your first post, I'd like to welcome you to Mayo Connect. I'm glad that you also found this video helpful.

If you are comfortable sharing more, could you share what brought you to Mayo Connect?

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Hi, I have a very rare lung disease called, Pulmonary Alveolar Proteinosis, I have had a whole lung lavage, AKA cleaning out of your lungs, 2 weeks apart in 2019. anyway, Thank goodness for the Mayo Clinic in Arizona, they found my breathing problem and am currently waiting another Whole lung lavage to take place after all this craziness goes away, I also have to be on a very interesting medication Leukine, that is keeping my surfactant at bay. Thank you

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I appreciate you introducing yourself, @teammayo1

I see from your post that you have a rare lung disorder. I found some information about it online, https://rarediseases.info.nih.gov/diseases/7499/autoimmune-pulmonary-alveolar-proteinosis.

From the description in the link above, this appears to be an auto-immune disorder. Is this your understanding as well?

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@merpreb We have now made and distributed 4 dozen masks in our small community. Each is given with explicit wear, removal nad washing instructions. A friend posted his and his wife's array, all washed and hung to dry the other evening after they ran multiple errands. We are pleased to see them in use, and how carefully most are removing them. Our county requires masks in public, and you are barred from any public building, store, etc without one.
Sue

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@sueinmn

@merpreb We have now made and distributed 4 dozen masks in our small community. Each is given with explicit wear, removal nad washing instructions. A friend posted his and his wife's array, all washed and hung to dry the other evening after they ran multiple errands. We are pleased to see them in use, and how carefully most are removing them. Our county requires masks in public, and you are barred from any public building, store, etc without one.
Sue

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Psst…@sueinmn – I wore one my daughter made for me to the grocery store this afternoon and only saw a few people wearing them. My wife wears them at work at the post office but some of their folks refuse to wear them saying it's too hot. 🙁

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@johnbishop @merpreb Due to all the Viruses I've had since Transplant my team recommends masked for me when I'm public and windy dusty days which in Arizona is alot. So I've gotten used to wearing them for the past two years. I'll agree that they can be hot but mostly when outside. Most post offices are air conditioned so I'm guessing it a pride issue. I'll admit I tried to find excuses at first but like anything you get used to it. I'm actually looking forward to more people wearing them and maybe they will stop looking at me like I have the plague. LOL

@sueinmn That's awesome, what a great way to help your community.

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@teammayo1

Hi, I have a very rare lung disease called, Pulmonary Alveolar Proteinosis, I have had a whole lung lavage, AKA cleaning out of your lungs, 2 weeks apart in 2019. anyway, Thank goodness for the Mayo Clinic in Arizona, they found my breathing problem and am currently waiting another Whole lung lavage to take place after all this craziness goes away, I also have to be on a very interesting medication Leukine, that is keeping my surfactant at bay. Thank you

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@teammayo1– Id' also like to welcome you to Mayo Clinic Connect. I am a 22+ yr lung cancer survivor with a different sort of lung cancer. It's called Multifocal adenocarcinoma of the lungs. Each nodule that first appears as ground glass is considered primary cancers. I have a lot! When was your Pulmonary Alveolar Proteinosis discovered? What are your symptoms other than shortness of breath?

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@sueinmn

@merpreb We have now made and distributed 4 dozen masks in our small community. Each is given with explicit wear, removal nad washing instructions. A friend posted his and his wife's array, all washed and hung to dry the other evening after they ran multiple errands. We are pleased to see them in use, and how carefully most are removing them. Our county requires masks in public, and you are barred from any public building, store, etc without one.
Sue

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@sueinmn– Sue, you live in quite a wonderful community. @ginger is also doing this. It is so selfless and helpful and amazing. I can sew on buttons! Giving as both of you do has to be so rewarding.

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@hopeful33250

I appreciate you introducing yourself, @teammayo1

I see from your post that you have a rare lung disorder. I found some information about it online, https://rarediseases.info.nih.gov/diseases/7499/autoimmune-pulmonary-alveolar-proteinosis.

From the description in the link above, this appears to be an auto-immune disorder. Is this your understanding as well?

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Good Morning:
Yes, it I do have the Autoimmune type, there are others like inherited pap for short. I have done a lot of research on it there is a pap organization that has a lot of information about the disease. Also the National Jewish Hospital in Denver Colorado has a department that specializes in the disease.

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@merpreb

@teammayo1– Id' also like to welcome you to Mayo Clinic Connect. I am a 22+ yr lung cancer survivor with a different sort of lung cancer. It's called Multifocal adenocarcinoma of the lungs. Each nodule that first appears as ground glass is considered primary cancers. I have a lot! When was your Pulmonary Alveolar Proteinosis discovered? What are your symptoms other than shortness of breath?

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Hello and thank you for welcoming me. I was diagnosed late 2017, Yes the shortness of breath, cough, fatigue, are all the symptoms as well as the ground glass, and too much surfactant. If it was not for my doctors at the Mayo who actually sent blood work to the National Jewish hospital it would not have been detected. The National Jewish Hospital is the Hospital that does the extensive test for this disease since it is so rare and usually missed by most doctors.

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@teammayo1– You are very fortunate to have had such a wonderful team. Do you also have lung cancer? Can you explain about lung cleansing? Are you awake? What does it feel like after?

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@merpreb. I just made masks for my friends. They are two layers of fabric with a filter layer in between.

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@merpreb

@teammayo1– You are very fortunate to have had such a wonderful team. Do you also have lung cancer? Can you explain about lung cleansing? Are you awake? What does it feel like after?

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Hello. I do not have lung cancer, my problem is that my body makes too much surfactant and I have to have lavages when the medication is not working, The whole lung lavages are quite interesting, there is a video on them on the Cleveland Clinic web site, just put in whole lung lavage and it should come up. There are also some on youtube, but there are some that are not totally correct, aka doing them the old way when they hit you to move your lungs, it's a long time ago. anyway, I am put under for about 5 hours for the procedure where they deflate the lung and put a liter of saline into my lung, shake me up and drain that liter of saline, this is done until it runs clear, they took out 20 liters on my right lung and two weeks later had my other lung done and they took out 21 liters each time they put one liter at a time in, that is why it takes so long, and then I am in ICU for the night. I must tell you, it does take a few days to get feeling ok, I am usually able to leave the hospital after a night in the ICU. I have heard of other pap people that have had 44 lung lavages, EEEK I am not sure I could make it.

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