Hi Esra (Gabe as well),

I wanted to share with you all some updates.

Gabe thank you so much for your thoughtful reply. As I’m pregnant I was having a stuffy nose for a while and the clinician you recommended who died the nose plugging and head nodding did help momentarily. I am a mouth breather and always have been. To answer your question everything turned out normal with oxygen levels etc. I do notice at times that I would wake myself up at times while sleeping as I would have a loud snore that would suddenly sound nasaly. I found that this was more when my nose was plugged up. I can’t remember if this was before while I was pregnant too as stuffy nose is a pregnancy symptom as well. Lately my nose hasn’t been stuffy and I don’t notice any snoring.

Esra, when I read that you have to force yourself to yawn to take a deep breath oh my gosh it made me feel good to know someone understands what I’m going through. Some days I can make myself yawn easier to produce a good breath and other days they are far and few in between. Do you also have chest pain? Does it get worse throughout the day, does exercise and eating big meals make it worse? I’m curious if you experience those things as well.

I’ll be going to see my cardiologist as a follow up from the echocardiogram and 14 day monitor which I already had access to the results and seen there were no abnormalities. I will share more info if he suggests anything else. My primary care dr did say that he thinks I have costochondritis but that it wouldn’t explain my breathing issues. He said ibuprofen and icing/heating chest would help. While it does help with the chest pain, it doesn’t help with the breathing.

Coming up I also have an appt with another pulmonologist to get a second option, another GI dr as well for a second opinion, and an appt with an ENT coming up. I will update you all when I have more info.

I do have a friend who is a nurse that has the same symptoms we have described and so far she has gotten heart and lung tests as I have mentioned which have come back normal as well. She did have gastric bypass surgery in the past and has not seen a gi dr which I told her might help to know to rule out if it is GI related. Her pulmonologist thankfully is not just turning her away at this point and is adamant about figuring this out. She told me they are going to do a Vscan and possible invasive CPET scan to see if there is any micro clots or scar tissue blocking anything. She did say they would have seen any scar tissue already with her x ray though which turned out normal. She has had these symptoms for over two years and has said she has just worked out recently for 30 minutes and hasn’t felt the symptoms so she is elated. This gives me some hope.

I pray that we all recover from this and find some answers. I can’t imagine living like this my entire life. I wake up every morning hoping it is either miraculously gone or significantly better. Id be happy for just even a little better too which it can be at times. Is anyone else here finding that this can make you want to isolate yourself more. I am self conscious of looking like a guppy out of water gasping for breath and have a hard time dealing with the pain and SOB to be present for others. I try my best not to but I have my days! Anyway, everyone take care and know that at least we get each other and your not crazy.