Hello @mimi206 and welcome to the DIPNECH support group on Mayo Connect, I would like to invite @californiazebra and @jhhaas to discuss this with you as they also have a DIPNECH. diagnosis.

You said that your recovery has been slow. Other than the persistent cough, have you had other issues post-surgery?

Hi @mimi206

I have DIPNECH and lung NETs (typical carcinoids) with 50+ nodules so we are not removing them. I did have microwave ablation to destroy the largest 2.6 cm tumor. I had a chronic cough for at least 30 years (miserable for me and those around me) until I started taking octreotide injections 4 years ago. The injection is every 4 weeks and within a few months it tamed my cough. I finally felt like a normal person who could go to movies, church, work meetings, etc. without drawing attention. Ahhhh!

So you didn’t have a cough before surgery? Just after?

Hi - some people do have a chronic cough with DIPNECH. I do not have a real cough, but I am very frequently sort of clearing my throat. I was doing that before my diagnosis and surgery also. I also experience shortness of breath on exertion, which also was happening before my diagnosis of surgery. My PCP tested me for allergies, which were positive, and he put me on allergy shots, and ultimately on Fasenra, which is supposed to be for asthma, but can be used for allergies as well. Since then, the tumor./s were found in incidentally and I had my right middle lobe removed. That’s when they also diagnosed DIPNECH. Interestingly, while I am very glad to have had the surgery, my original symptoms of clearing my throat and of shortness of breath and exertion have not changed. I continue to take the allergy shot though because it seems to be keeping all other sicknesses away. If the symptoms get worse or my scans start showing changes and growth, I think then I would get a second opinion and more strongly consider one of the treatments available. There are people with DIPNECH who have very bad coughs for example. Best wishes to you. This is quite a journey. I can look back and pinpoint when the symptoms became a problem, and it was probably five or six years before I was diagnosed. But I think my two symptoms were developing even before then.