about how some views toward health care actually damage the lives of real people.
And now I need advice, because the situation has grown so far out of my control and I think I’ll go out of my mind with worry.
Short version, I'm recently unemployed, uninsured and I have a mass on my left ovary the radiologist report suggests is a tumor in need of biopsy. The pain is a constant 5-6 based on this scale, with spikes up to an 8 that are brief or hours long. I've fallen between the cracks of the healthcare system and my boyfriend can no longer cope and has dumped me as of last night. I've listed the options I'm considering, as well as the things with which I'll need assistance for each option. My questions: 1. How/where else should I look for assistance? 2. Have I missed anything I should consider?
I have at the absolute minimum, one month to wait until I get a referral to a gynecologist through the county. On Monday this week I was told that my normal pap smear meant I could not be referred because there was no need, and there was no record in my chart of my wanting a referral. I asked the nurse when did pap smears start finding ovarian pathology? And cried. She asked who told me I have a tumor. I told her that my MRI and ultrasound reports are in my chart. A few hours later she called back to tell me very excitedly that the doctor has started the referral process, but it will take some time. Hoping that I could pick it up the next day, “I asked how long is some time?” A month, maybe a month and a half. Nothing can be done to make it happen faster, because the referral is being done by the county, not by the clinic. My trust in this system is almost irreparably broken by several other mis-statements at every level, from scheduling to billing to nurses and the Nurse Practitioner who delayed my referral.
My boyfriend talked me into making an appointment with a gynecologist acquainted with a friend of his. He’d convinced me to do this a month ago, but only sent me the contact information Monday, despite several reminders, and pleas. Thanks to some name dropping they squeezed me in for next Monday. The first visit will cost $230 plus any labs or further ultrasound. I had been calling other gynecologists whose offices declined to accept a “self pay” patient with a known tumor and no insurance of any kind.
Yesterday my boyfriend dumped me. He said that I have “a lot of projects going on that he doesn’t need to be involved in.” Yes. I suppose finding a job and getting health care is a lot of projects. My name is on the lease, but we just got a roommate to help defray the costs of my uncertain situation. He had talked to his parents on Monday and they told him that I seem lost and all of his help is doing me “a disservice.” My name is on the lease, however I am sleeping on the couch until I can find another place. They also expressed that he "doesn't need to be taking care of someone else while he is in Medical School." And he agrees with them.
Several mefites have reached out to me to offer help and to suggest some courses of action. These are the two that I think makes the most sense:
Crowd source funds to get pre-existing coverage insurance. This will take a few weeks and have a deductible, likely pretty high. [worst case is $235 per month for a maximum of $7,000 catastrophic maximum excess.] Find a surgeon who accepts that insurance and can make a payment plan for the remainder if necessary. Get surgery while living with my ex-boyfriend, then find a job and then get an apartment. If the ovary is not invaded by the tumor/has no other pathology (isn’t twisted), it might be spared and I can keep the pair. This is not a priority for me, but several people have mentioned that staying in this system allows that. Hope to not need chemo or radiation.
Option 2: crowd source funds to go to another country with less expensive health care. A couple of mefite friends I met are medics in another country and have invited me to visit them. With their help, the kind of pain and my history I would be operated on within a week and just have to pay hospital charges much lower than here. The ovary would likely not be saved. I do not hold a current passport, so I would need to get one. [worst case scenario about $7,000 to be cared for by people who...uh...care]
Either way, a friend has requested that I go help with her baby for a few weeks on the East Coast. She’s a stay at home mom and the baby is sick. They can’t pay me to help, but they can feed and house me for a few weeks. This is appealing because sleeping on a sofa and interacting with the guy who just dumped me is going to get old. Also, I love this friend and her husband and their toddler. We would all be helped immensely by this. If possible, crowdsourcing of frequent flyer miles to accomplish that trip? Are there websites for that?
Staying here in Orlando gives me little to do but beat the job search path (knowing as I do that I need abdominal surgery) and mope around the apartment. I volunteer teaching adults literacy and I go to a knitting group one night a week. I don’t own a car, so I have been pretty isolated here.
So now that I’ve outlined what I need to do, I need help mapping out the logistics:
What are the best crowdsourcing websites for fundraising? I have heard of Chipin and...some others. Pros and Cons of them? How to encourage people who want to give but want more control over where the money goes? Amazon wishlist? Something else?
Part of my health problem is that I’m having a cognitive decline. I have trouble integrating information. This question has been in process since I asked my last question (I asked it to give myself time to formulate this without being hasty.) We don’t know if this is because of the tumor or something else (well, some think it may be the tumor/hormones, others think maybe it’s lupus or RA. I wish I were kidding.)
I need help comparing PCIP insurance plans. Who can I contact for that?
Things I have done/tried:
Enrolling in medical trials
. My joblessness/no insurance status makes me a poor candidate, because trials have costs involved. The screener stopped there.
at local hospitals: they referred me to Medicaid and the county program. Florida would qualify me for Medicaid if I had a disability or a baby or were pregnant.
Gone to the emergency room
in excruciating pain. They did an ultrasound, decided the ovary was not twisted and gave me Percocet and a prescription for tramadol. This was the public ER that is required to provide the most care of all the ones local. While I understand that in other countries/other situations this would result in at least someone taking a look inside, I was given an ultrasound and sent on my way when the results of that showed probably not twisted. That level of pain returns near daily, but I fear being labeled as a drug seeker in the health care system. Also, the bills.
Finding a job with health insurance
. Finding any job has been very difficult, health insurance even more so. I have been reminded that small business insurance costs go up dramatically with cancer treatment. I am not interested in having a small business feel like I screwed them over. It does look like this is just going to be surgery and done, but there is a small chance that this is very bad news.
Looked into starting a non-profit or charity
to make donations from my larger social network more appealing. However, a kind Mefite has found this in the tax code (and I'm quoting the IRS here): "must be organized and operated exclusively for exempt purposes...and none of its earnings may inure to any private shareholder or individual."
While I have a pretty long history on Metafilter and there are mefites who know me in person, I’m supremely conscious of the difficulties in the past so feel free to ask questions.
HiveMind, is there something I’m missing?