Anyone living long-term with DIPNECH on lungs?

@nannybb
Glad the octreotide has helped your cough and mucus. Ahhhh, the relief!

@nannybb
I did not have pneumonia as a child. Lots of asthma free m allergies and respiratory infections. Have always needed antibiotics to clear up lung infections and usually a steroid pack.
Cats are the one animal I have not tested my new allergy improved lungs on as that’s my most dangerous allergy. Horses are second. I’ve petted them with success but not tried riding them. When I pet animals I always wash my hands right away and don’t touch my face to be safe but at least I can pet them now. I even held my grand-dachshund with success.

@jhhaas Haha...I think I am repeating MYSELF half of the time. You did not. I forget who had what symptoms. Looking back, I know I had a productive cough for some time. I kept bring that up to my G.P. Her response was to get Covid booster shots.🤦‍♀️ She tried to push boosters on me with ever visit. I already had to vaccinations and regretted those. Took awhile for her to understand I wasn't getting any more. People at work noticed the flushing in my face. My boss asked if I had a fever. So it was noticeable. I am still getting it on my cheeks. People say it makes me look healthy...😁 I just smile. I didn't tell hardly anyone at work about the cancer at first. I didn't want the pity. I work for a huge Catholic retirement facility. I did tell some of the nuns I work for. They are so sweet and I needed their prayers. Hope you have a splendid weekend. I'm going to get outside for a walk ...at some point. 🤔 Thanks for answering. 💕

@californiazebra when I called Cleveland Clinic to ask about their program, the person who called me back said there is no diagnosis code for DIPNECH. She also said they tend to go under 2 diagnosis codes — D3A.8 = other benign tumors or J84.8 = other pulmonary disease. If DIPNECH is split between 2 general diagnosis codes, it does not help to know how many people there actually are with it, in addition to it already being a condition that is difficult to diagnose.

@californiazebra They are suggesting ablation for burning the nerve bundle causing my pain. What you had done maybe is different?? Like I said, my video call was with a N.P. who works under my pain specialist. She seemingly could not answer many of my questions. I was left with a big question mark on my face. I had a friend listening in. They got the same impression. We looked at each other when she signed off and asked, "What just happened?" I've got to get an oncologist on board. Not having any CAT scans since surgery in July also has me worried. Frustration is setting in. I spoke to a social worker on Thursday who asked how he could help. I told him about the referral to an oncologist from my G.P. and not hearing back. Heck, the scheduling dept. didn't even see the referral when I called to ask. The N.P. said SHE saw it on my chart. THAT made no sense either. I used to work in medical. It was pretty cut and dry back then. I'll have to delve back in on Monday.

@nannybb same with me, I forget who all the different people are that I respond to, so forgive me for asking this, but just wanted to make sure that you’re flushing is not due to menopause symptoms, cause I did have that years ago and that was pretty awful. I’m told it’s more likely to happen with atypical nets though so keep a close eye out and keep monitoring everything.

@californiazebra respiratory and lung infections?? Like bronchitis?

@jhhaas Nope not menopause.. That shipped sailed...⛴️

@nannybb
Yes, if they are burning the nerve bundle that is different. For me, they were burning the tumor to destroy it. Just dead tissue was left behind. Just guessing, but for nerves, they may heal and regenerate over time. I have a friend who has had to repeat nerve ablations in her back for pain. Ablation technique can be used for lots of different things. Frustrating for you to have the medical professionals dropping the ball on your care.

@nannybb
I have flushing with typical carcinoids but discovered certain fruits trigger it so I think it’s a histamine intolerance. I stop those foods and it stops. Notice what you’ve eaten the day it happens.