New and undiagnosed

Hi Yvonne - "Ground Glass Opacities" - doesn't that sound scary? But...it really isn't that uncommon, especially with pneumonia or another lung infection. In the "olden days" of x-ray only, that same phenomenon was the indicator of pneumonia, and my doctor used to say "your lungs are cloudy" to me.

So why weren't you told? Because to the doctors it probably was just a confirmation of what they already told you - pneumonia - current or recently past. When GGO's are from an infection, they usually just stay the same or gradually improve. If the get larger or worse, it is cause for additional investigation to find an underlying cause. When I had a severe lung infection, several lobes were mostly clouded. As the infection was treated, the GGO retreated, and is now only in my worst lobe.

"What is ground glass opacities on CT?
Ground glass opacity (GGO) refers to the hazy gray areas that can show up in CT scans or X-rays of the lungs. These gray areas indicate increased density inside the lungs. The term comes from a technique in glassmaking during which the surface of the glass is blasted by sand." (mednewstoday)

"If the nodules are increased in size or solid component, more invasive therapy is suggested. Infections, benign nodules, and intrapulmonary lymph nodes often resolve or become stationary after regular follow-up." (nih.gov)

I know Yvonne, that you like to research on the Internet, and some of what you read sounds scary - but until you KNOW whether these are changing (getting worse) please think positively. GGO's didn't cause your pneumonia - a virus or bacteria does that - they are just a sign of it.

Off to prepare my friend's tiny house for her return - she broke her hip on Wednesday & had surgery yesterday. Now our "troops" are gathering to care for and support her as she recovers. My job is to get what she needs (pillows, ice, shower chair...) in place and fill the fridge and freezer with easy food for her return tomorrow.
Sue

Hi Sue.. had ct scan friday. My family doctor called this morning saying lungs have improved. That the fibers (?) making them think it might be Interstitial lung disease are getting smaller. The GGOs are better. He did say I have 1 non specific lymph node near the trachea which they did see on the 1st ct. Can you tell me about those? My doctor admittedly wasnt sure.

I can't begin to guess what that means - other than another referral to an endocrinologist for a further look.
But I am glad to hear the GGO is better - probably confirms it was an "artifact" left by the pneumonia.
Sue

Hi @yvonne55, I see that you are getting top-class support from both @merpreb and @sueinmn in this discussion as well as comments in another discussion about lung nodules https://connect.mayoclinic.org/comment/786637/ where you state:
"I've had "pneumonia " twice in summer. Collapsed at home in Aug. Sent home after 10 days (6 of those in ICU) and collapsed again 2 weeks later with sepsis as well as lung issue. Intubated, bronchoscopy, echocardiogram, lots of blood work, ct scans. No diagnosis. No symptoms leading up to collapsing. Drs guessing severe pneumonia or Interstitial lung disease. Healing well now, ground glass opacities are shrinking and swollen fibers shrinking. Ct done on Dec 9 saw "non specific lymph node" nearer to trachea. "

It sounds like you are in good hands and that your doctors are following you closely. I concur with Merry and Sue that you should advocate for yourself and be informed. But you also want to keep balance your stress levels and have confidence in the care you are getting.

You are healing well now. That's great. Recognize that you've been through a lot. ICU is a scary experience and you may be experiencing post intensive care syndrome (PICS). PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

You can read more about PICS in this blog
- Post Intensive Care Syndrome (PICS) https://connect.mayoclinic.org/blog/pics/tab/faqs/#ch-tab-navigation
- Breaking it Down: What exactly is Post Intensive Care Syndrome? https://connect.mayoclinic.org/blog/pics/newsfeed-post/breaking-it-down-what-exactly-is-post-intensive-care-syndrome/

As you wait to see the pulmonology specialist soon, I might suggest focusing on your mental well being. Eat well. Get enough sleep. And perhaps talk to someone like a social worker. Have you asked about a social worker at the hospital where you are receiving care?

Thank you so much! I had no idea about this post intensive care syndrome! I'll look into it for sure. I can look into the social workers but I believe they only are available to current hospital patients. I'm sure they overloaded. Stress is hard to keep tabs on as I'm going thru a separation and hes a renal patient who's not been happy about helping me. I've been under much stress. And therapists have long waiting times . But thank you for your info!

@yvonne55, this blog post includes a comprehensive list of how to find a social worker:
- How to Get a Social Worker https://howtogeton.wordpress.com/how-to-get-a-social-worker/

Serious illness causes a lot of strain on relationships. A new member, Mimi, just posted this discussion that you may wish to join:
– Living with Brain Tumor or Serious Illness and Relationships https://connect.mayoclinic.org/discussion/new-to-this-forum/

I'm having my 1st visit to a pulmonologist Jan 3. Can anyone tell me what to expect? I have a lot of questions I must ask him because my own doctor tells me to ask the pulmonologist when I see him. I'm really nervous. Not knowing is difficult. Sometimes knowing is scary too.

Hello Yvonne - I'll repeat an old joke here - my Dad used to use it when us kids were nervous about how to behave about the "important" people in our church hierarchy were going to be at dinner with our dear pastor. "He's a man, just like the rest of them - still puts his pants on one leg at a time - even under his cassock." So relax, the pulmonologist is a doctor, just like your primary - he still is there to help patients - he just concentrates on lungs.

As for questions, what I have found helpful when dealing with a complex situation:
Take a pad of post-it notes (or small strips of paper) and write one question on each as I think of them.
When I run out of ideas, I sit down with the pile and organize them, most to least important, and combine questions where I can.
Next, write them in order of importance, neatly & succinctly on a pad of paper, leaving room for notes about the answers.
At the appointment, try to focus first on what the doc is saying - many questions might be answered as he talks with you. Then, at the end say "I have a few more questions..."

If the doctor orders tests, and you sense there is time, ask what each is for, if not, write them down & look them up.

Finally, ask if you may have a written after-visit summary that will often contain notes about what the doctor observed, what he is trying to rule out, and maybe even a tentative diagnosis.

Does this help?
Sue

Hi Sue! I was thinking more along the lines of if theres the 6 min walk test, or the test where my nose gets clipped shut and I have to breathe in and out as quick as I can, or the inhale as deep as you can into the gizmo with the little plastic ball.
I'm not nervous about him being higher up the proverbial ladder than I, I'm nervous because this could be the day I actually finally start finding out what's wrong, illnesses that could be eliminated and ones that could still be "in play ". They say it wasnt covid, some said it wasnt pneumonia, one said Interstitial lung, another said the symptoms dont match, I dont think its asthma nor COPD. The only sure thing was the second time whatever it was included sepsis. And the bronchoscopy test results showed nothing.
My own doctor wont even advise me if getting the pneumococcal vaccine is safe. He said ask the pulmonologist. So yes my list is growing!

When I went to the pulmonologist first time, it’s mostly for history. They will order tests but you most likely won’t have them that day. They will be scheduled for a future date. For me, They ordered a CT of the chest, a PFT (pulmonary function test) that they do clip your nose, an overnight oximeter test ( you just wear a monitor), bloodwork, and eventually I had a bronchoscopy. They did a finger stick to test for hereditary emphysema. They also wanted to do a sleep study, which I opted not to do. I had an X-ray of chest prior to my visit. I hope this helps. Good luck! P. S. These are all done spread out over time I don’t want you to feel overwhelmed.