Masks are just not masks

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.

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.

@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?

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

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.

I am tired about the mask fiasco. People in China can purchase medical masks in the store and send them to us by FedEx. But we aren't supposed to wear these medical masks in public in the United States because that takes away from health care workers. So why can people in China go to their local stores and buy these medical grade masks but we can't in America? The medical masks are much much more comfortable to wear in public. You can breathe through medical masks. But you can't breathe and talk through the two layer tightly woven cotton masks. I have been making and donating these cotton masks for weeks. So I am pretending that I am on Little House on the Prairie and doing my part in this Pandemic. But I know that medical masks are better for everyone in every situation. Also I was listening to the doctor talking about masking being common in Asia. He seems to think it's because of virus. I think people in Asia wear masks because of air pollution. The air is very dirty in China and they burn coal in winter. That's why people in China wear masks. So it just turned out that masks are helpful for viruses in addition to air pollution. We don't wear masks in America because the air is cleaner.

@teammayo1- Good morning. Holy cow, what a procedure! I bet it takes a bit to get back on your feet! Wow. And they really shake you up! Actually Cleveland Clinic did have a tube video for whole lung lavage!

@becsbuddy- Morning Becky. Good for you! I don't sew. What do you use for a filter? I wonder if HEPA filters are ok?

@ihatediabetes- I hear you about masks. Actually, right now the only masks that we have in our home are surgical masks. The big thing about masks right now is that In America there aren't enough to go around. I can't go into many of the reasons because we don't discuss politics on Connect, but there are reasons. It is exhausting to hear. I think that we all know, in America, that China has lousy air and people are encouraged, at least, to wear them when they are out in public. And mostly because of the air. I don't think that Dr. Poland meant that it was a new thing in China. I hope that you are well and safe.

Good morning: Yes this is something I am not looking forward to. I was to have the procedure in April, but now that the virus is here the Mayo had to postponed the inevitable until June not sure what date yet, then 2 weeks after that I go back and have my other lung done. It is quite a lot for my medical team, it is an all day event, I am usually the only patient for my team that day.