Diagnosis: Dipnech

09/04/2025

My lung scans went from yearly to every two years, then back to yearly.
I recently had my scan. Normally, I vomit profusely from the IV dye contrast and the speed in which it is injected.
I challenged the technicians. I felt like they were disregarding my concerns about my previous experiences during the process.
Evidently, there is a new procedure that minimizes the side effects including the violent vomiting. Previously, the technician manually injected the contrast and they would “force” it in at a fast rate which would cause the body to react adversely. This newer procedure makes the process much more tolerable. I am curious what this new procedure entails.
Requesting a dish or bag to throw up in, I kept it by my mouth just in case I needed it. The technicians also offer alcohol wipes to place under the nose which is supposed to help prevent nausea. It is THIS smell/taste that would turn my stomach, causing me to vomit in violent successions. I declined the pad for this reason.
The preliminary results of my scan show that the DIPNECH is stable.
It is recommended that my scans resume to yearly.
I have been coughing the last several weeks due to recent colds and pollen.

23/03/2025

I saw my pulmonologist recently. What was supposed to be my biannual appointment has now changed to annual appointments because I missed a bi-yearly scan.
We discussed my 2023 adrenalectomy due to a Cushing’s tumor. When I called his office in 2023 to ask if this “endocrine” scenario could correlated to DIPNECH, the answer was “No”.
Having this same discussion with him two years later in person, he now thinks the Cushing’s tumor is “suspicious” and that it ‘may be’ related to DIPNECH.
I am scheduled for my scan in the next few weeks. I will learn if the scan shows stabilization or if there has been an increase in benign tumors.

01/09/2024

03/08/2024

21/07/2024

getbook.at/darkness 📚✨

21/07/2024

21/07/2024

Talk about orderly. 🐎 🐎 🐎 🐎 🐎

21/07/2024

A recent post from a patient has piqued my interest in why we have yet to find pulmonologists who are dedicated to researching, understanding and treating DIPNECH. The disease is still too rare; plus the yearly/bi-yearly scans are astronomically expensive and do little to nothing to treat or remit this lung disease. If anyone hears of a specialist who successfully studies and treats DIPNECH, please share their information.

19/09/2023

The endocrinologist is recommending that I see a cardiologist because of my energy being drained often.
Post adrenalectomy, I am still mindful that with the DIPNECH diagnosis my lungs should still be monitored.

It is important that we take care of our bodies and monitor our health regularly.
Most of all develop and maintain a positive attitude and mindset at all times. Be good to and love yourself.