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Anyone living long-term with DIPNECH on lungs?
Neuroendocrine Tumors (NETs) | Last Active: 5 days ago | Replies (77)Comment receiving replies
@nvent5
I didn’t know that, but you’re right. I just looked it up and DIPNECH is tracked under “other lung disorders” and “other neuroendocrine” catch all diagnosis codes. That’s a problem and I hope it changes soon.
Replies to "@nvent5 I didn’t know that, but you’re right. I just looked it up and DIPNECH is..."
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@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.