I spoke on the phone this morning with a woman asking about my LJ and about my experiences with our health care system and how it had failed me. She had concluded that we had lost our house because of health care costs. That's partly true, but here's the rest of the story.
Since I was so incoherent.
Penny health issues: gallstones(1986)caused by Nutrasystem diet, basically untreated by Kaiser until 1993 when became life-threatening, botched laparascopic cholecystectomy 1993. Diagnosed diabetes 1991 after grandmother died treated with drugs but not by diet - gallstones may have contributed to diabetes, along with glucophage (acute nausea) made her unable to eat safely. Childhood asthma recurred and active since 1979. Basically no cartilage in knees due to untreated highschool injury, compounded by obesity profoundly worsened by each new insulin-boosting drug, and after switched to insulin. Three or four miscarriages.
My health issues: narcolepsy, gout, metabolic syndrome on and off.
In 2001, laid off from computer programming job at NEC, COBRA coverage stupidly expensive, went to Kaiser's self plan at about 575 per month for both of us to be members, plus about 120 per month for meds and doctor visits; lab tests free. Penny skipped pap smear out of misguided cost cutting (did not tell me she did this!)
We had gone through jobless periods before, and knew we could endure, but knew we could make it if necessary.
In hindsight, should have sold house then, moved to smaller place, perhaps changed leased car into purchase, but that's hindsight.
Job market was weak but was still getting interviews and leads. 2001 sep 11, all jobs dry up as dot-com bubble pop turns into jobs black hole.
Brief work at Norm Thompson call ctr, asthma/flu/pneunmonia causes Penny to quit. I kept going thru holiday.
2002 jan, my incipient diabetes warned, Penny puts me on Atkins (worked for me); meanwhile her pap smear found "unusual" cells, dr appt scheduled in March for JULY due to appointment availability.
Kaiser costs increased, changing to age-based plan rather than single-price plan, with steep price increases as one becomes older. Shameful. Result: 624 per month for both of us to be members, plus about 200 per month for medications, doctor visits, lab costs.
D&C diagnostic finds cancer. No anaesthesia.
Meet in mid-July with NW Cancer Specialties doctor. All this is covered - but I miss two Kaiser payments - neighborhood had been experiencing mail thefts, but I may also have simply forgotten one. I make payment at Kaiser, and they reinstate account. Note, late 2002 Kaiser further 'cuts costs' by consolidating all membership billing to an outsource agency in Richardson, Texas. No longer allowed or able to make payments at any Kaiser site for membership billing. All other payments are, of course, accepted at the member services desks, and at the check-in desks.
In September (yes, it took them six months to get around to this) Penny had a hysterectomy. They followed it a month later with two months of radiation treatment, ending on 23 December 2002. During her rad. treatment I worked at Norm Thompson again for the holiday sales season, answering phones for customer service. It's great but doesn't pay that well.
In 2003, I had part-time work, but to afford an 1100/month mortgage plus 324/month second mortgage, 285/month car lease, plus insurance, electric, water, sewer, gas, gasoline, and an increase to 675/month membership for two at Kaiser, not to mention food and clothing, we continued burn slowly through my savings and retirement. I continued six hours a day job-search (2 applications per day) and we discussed moving further away. Penny got better for six months but then began to feel pain again, losing her ability to walk unaided.
Kaiser tried a colonoscopy and a CT scan but found no cause. Increased her insulin which helped with truly out of control blood sugars, but she also gained weight again.
Sometime near December, because I was sending my payments to their Pullman, Washington "overnight" site, and because someone in the transition between Pullman and Richardson used my ORIGINAL NEC Kaiser account number, I found myself two or three months behind in membershio payments, and once again, without health insurance. I was told that I would have to apply to be re-admitted because I had, in the previous 18 months, failed to make payments, and that they simply could not change policy simply because it was their own screw up. They graciously permitted me to re-join, but I was required to sign up for electronic payments, where they would make their draw on the first of the month.
So in January 2004, we were suddenly up against it.
The temp job ran out - no more to do. We continued to go through remaining savings, with the costs of Kaiser and medications equalling the cost of our mortgage and taxes. Penny was unable to climb the stairs in the house alone, and going out wiped her out for two days from pain in her knees and hips. So, she didn't make the appointment to go get her annual CT scan to follow up the cancer. It might, or might not, have worked; they were looking at her lower abdomen, not up around the liver.
In July with three months' money left, and still no job, we determined that we had to get help, contacted friends from our church to help us organize, and began working with a friend's brother-in-law, who "flips" houses, to find a buyer. We talked to our mortgage holder and our credit union (holder of second mortgage) about what would happen when, and stopped paying the mortgages end of September, annotating the accounts so they knew what was going on, and that we were selling.
In November, the week before Thanksgiving, I got a call from a guy at Intel who hired me after a half hour phone interview. This was for a year contract, and the contracting company Kelly Technical Services did not have reasonable medical benefits, but it did mean I would be getting paid well enough to afford medical costs, and insurance and some prescription benefits. We had still determined to sell the house, and get into an accessible apartment that Penny could get around in.
The first week in December, I placed enough money to cover the Kaiser payment in the appropriate account - and the Credit Union immediately grabbed half of it to cover second mortgage payments, and Kaiser called to tell us we had missed another payment. I called the CU person in charge of loans, who was very apologetic and offered to put it back but Kaiser was unwilling to accept payment EXCEPT through the regular monthly draw.
In January, Kelly was one day later than usual depositing money, because, NEW YEARS. And Kaiser drew on New Years, but again there wasn't money in the account - cash flow hell. They informed us that we were in default, I spent several hours talking to them, was told that I had been terminated within 18 months and therefore could not be reinstated, even though the previous termination had been their fault, but feel free to appeal as was my right under the terms of service. So I prepared another grovelling letter explaining the circumstances, and mailed it certified mail, but after three weeks (and running out of meds) I called to ask whether they'd considered it - it hadn't been received, wait it had, it's on the desk of the services supervisor (and has been for apparently three weeks.) I called back the next week, and then two days later, got a very snippy woman, presumably the supervisor, who informed me that they were doing us a favor by even considering the application. I'm afraid I was unkind, and told her that I didn't appreciate being lied to or given a snow job, that she was required by law and by their contract to consider the application, and that since it was Kaiser's fault through their internal incompetence that I'd had to do the appeal before, they had no legitimate grounds for complaining about that. She promised to call back by the end of the week.
I received a letter a month later telling me that our application had been declined.
By then we'd given up on them anyway, and we were in the process of packing and preparing to move.
This is, incidentally, how I went from being a Kaiser supporter for 20 years to someone who wants to see their not-for-profit status revoked. They really are more concerned about money than about any patient, and I will change the channel whenever I see one of their slick advertisements.
The post-script to all this - we learned, in September of 2005, that Penny's cancer had returned. She died in her sleep on January 12th, 2006, while I was out at a job screening interview. We had just signed up for home health care, with the idea that we might somehow get her healthy enough with palliative chemotherapy that she could recover enough for more aggressive treatment, and she'd been visited that morning by her nurse.
Do I think that she died because of poor health care? Perhaps. The mechanism of endometrial cancer is only now being understood, and high insulin levels are one of the causes, along with low levels of progesterone. There was a study presenting this mechanism that was published in December of 2005. Perhaps if our oncologist had known about this, instead of telling Penny that being fat was the cause of her cancer, he might've arranged for preventative chemo in the form of a monthly progesterone pill.
(This is why the no-periods pill is a monumentally stupid idea.)
And, certainly, if we'd had some kind of universal coverage, or if it hadn't been half-to-a-third of our monthly costs, we wouldn't have blown through money so fast. And perhaps we might've gotten better treatment.
I cannot fault any of her doctors. There were places along the way that we could have changed things.
I'm screening responses to this.