Comment by eitally | Hacker News Reader

Comment by eitally | Hacker News Reader

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I'm thankful your wife had the wherewithal to persist in both her research and pestering of medical professionals. We recently faced a similar situation with our young daughter (was 20mo at the time), who was diagnosed with a rare intracardiac tumor last fall. The first prognosis we received (from the chief pediatric cardio-thoracic surgeon at Stanford) was that it was inoperable and we should take her home and enjoy her while she was healthy.

Thankfully my wife also persisted and three additional opinions later we found the right place with the right professionals and demonstrated experience and our daughter is doing great post-surgery.

We learned the same hard lesson you have, both regarding the healthcare community AND family/social support. I feel particularly bad for the huge population of folks who are unable -- for whatever reason, it could be lack of insurance or it could be lack of education, or lack of funds -- to ensure their family receive the best care possible.

Recognizing the medical industry as what it is can be really difficult. It's not just there is a bell curve of knowledge and ability, but something with more dimensions that accounts for a world as a big as ours.

Just like I'm sure there are software shops out there doing what I would call impossible, not all doctors know the full extent of the practice or where those particularly skilled practitioners might be.

I was abruptly fired and unemployed when my daughter was born, which paradoxically has saved us money in medical expenses, as a pregnant woman and her infant retroactively get Medicaid. So while we have primary insurance, the secondary Medicaid is active for a year before it has to be renewed (which we won’t do as my income is too high). It covers all the copays of her primary insurance and we haven’t had to pay a cent. It’s all been pretty surreal.

We also got to deal with a bizarre situation of me breaking the health insurance bank at the contracting firm I worked for. When benefits renewal came up at the end of the year only a high deductible plan was available at $1220 a month! So we dumped their plan (I feel bad for everyone else, but what was I supposed to do?) and bought her a $325 a month plan with a $500 deductible. Technically I didn’t have to, because of the Medicaid, but it made me feel like as someone who makes close to six figures employed, I shouldn’t be taking government benefits just because they’re offered.

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