On my post about going to Cedars, I received the following comment:
I find it strange that you would go
to one of the best medical and research facilities in the world, and then
question the quality of care you are getting. Sounds like you don't want to get well.
I gave a cursory response in the comment section for the post, but I wanted to address this for everyone to see (just in case there are others who feel this way).
I find it strange that Paladelicioso could've read the post (and the entire comment thread) without seeing that I posted several reasons why this surgical option is something I'm hesitant about. So, I'll put them in list form so that those who feel as he does may understand the full picture.
1. The comment that I "don't want to get well" makes me very angry. I have spent the last two years dealing with an illness that, at this point, has NO cure. We can manage the symptoms, but that's about it. I would *love* a cure. I find myself wishing for one on a daily basis. But, the truth is that there isn't one that exists and, as such, I will never "get well". Consequently, even if I had the surgery for the kidney, it is not going to make me well.
2. I never questioned the quality of care I received. I questioned the procedure. I questioned the way in which it was presented and, what I perceived as, the eagerness of a physician to leap to surgery without having all the appropriate information. Surgery, no matter how safe we think it is, carries risk. If you don't go into a surgery with the desire to minimize those risks, or if you ignore the risks, then you are stupid. As it stands, I have risk factors that many people do not have and I want those risk factors addressed.
3. I think it's the responsibility of every patient to question their physicians and the proposed options. Why wouldn't you give this due diligence? "Medical experts" are human. They're not gods. They can, and do, make mistakes. They also do wonderful things for many, many others. But, I have four children. I can't afford to consent to a procedure while I have questions.
4. My husband and I agree completely on these points. Would you have the gall to say that *he* didn't want me to get well?
5. I've dealt with lupus for nine years. The surgeon may know everything there is to know about urologic or nephrologic surgery, but I wouldn't be surprised if he wasn't up-to-date on lupus. Furthermore, I know my body. I know what it can and can't handle. If simply driving to a doctors appointment makes my blood pressure go up, blisters my skin, and wrecks me with fevers and exhaustion for weeks (just from an hour in the car!), then how on earth would I survive a surgical procedure and the two hour drive home?
Bottom line: You don't know me. You don't know my entire medical history. You're not going to find many atheists who go into major decisions without having a clear and complete understanding of what it is they're getting into. And, one doctor -even a specialist- is one doctor. He's human...not a God. It's my right and responsibility to get other opinions. I didn't slander the physician. I didn't suggest the quality of care was bad. So, please keep your bullshit, insulting commentary to yourself.