Lots of you have asked me to write about something good that is happening in our healthcare system.
This is hard to do as millions and millions of Americans are denied access to basic health care.
However I'd like to tell you about a heroic Kossack who has sent me several emails about her long and difficult battle with cancer as a Medicaid patient in California.
If you want to learn about courage in the face of tremendous adversity, then you should read about this remarkable woman.
Medicaid is the government insurance program for low-income Americans. For this woman it generally delivered healthcare as it was intended. Her care was by no means perfect. There was at least one huge lapse involving a CT Scan, and possibly another involving a medical error. But if you take the time to read this entire diary, you'll see that given the gravity of her medical nightmare, she believes most of the care she received was adequate.
Of course, any doctors who read this may see things differently and of course they should let us know.
And you should also read this against the backdrop of the draconian cuts Mr. Bush is planning for Medicaid.
The White House is clashing with governors of both parties over a plan to cut Medicaid payments to hospitals and nursing homes that care for millions of low-income people.
The White House says the changes are needed to ensure the "fiscal integrity" of Medicaid and to curb "excessive payments" to health care providers.
. . .Medicaid finances health care for more than 50 million low-income people, with money provided by the federal government and the states.
Under the White House plan, the federal government would reduce Medicaid payments to many public hospitals and nursing homes by redefining allowable costs. It would also limit the states' ability to finance their share of Medicaid by imposing taxes on health care providers. About two-thirds of the states have such taxes.
http://www.nytimes.com/...
Please be warned, going forward much of this is quite graphic. It is disturbing medically. If you find medical ordeals terribly upsetting or are squeamish then stop reading here.
I was diagnosed with cervical cancer in September 2002. The next month I had a radical hysterectomy.
The oncologist told me he got all the cancer and it didn't spread to other organs or to the glands and lymph nodes that were removed during surgery. He said it was Stage 2A cancer. While waiting for surgery I did research on cervical cancer on the Internet and while lying in the hospital bed listening to the oncologist I remembered that stage of cancer had a 65 to 75% survival rate after 5 years. The news was welcome relief.
Her medical story is long and extremely complex. It involves numerous cancer surgeries, radiation treatments, chemotherapy and lots of complications.
What follows are excerpts from the intial twelve page email I received.
Three specialists came to see me and two of them I'm not sure of their area of expertise--liver and urology? I do remember the kidney specialist because he was the first one to talk with me in my room and came at least twice over two days. He assured me everything was fine, no problems with my kidneys, and he was called in just to make sure everything was ok after such an evasive surgery. The other two specialists said basically the same thing. At the time it all seemed so unnecessary and an excess.
If I understand the medical complications, during the course of the surgery her bladder or ureters were nicked or cut. In addition some of the radiation therapy involved internal treatments which resulted in even more anatomy-altering serious complications.
In the hospital my incision started oozing. The wound had to be opened up and packed with gauze twice a day. I returned home after 8 days in the hospital and a home health came to my home every day to change the gauze in my open wound.
. . .Within the next week I saw the radiation doctor. She was explaining my ex-rays she pointed out the stents and said they were tubes inserted down the uterers between the bladder and kidneys. The radiation doctor said didn't know why the oncologist inserted the stents. I asked oncologist about the stents and was told it was to keep my kidneys functioning because during surgery organs get moved around.
. . .So, the daily radiation and weekly chemo started concurrently. After a couple of weeks, my urine turned brown.
. . .So, I went to the oncologist and was told the incontinence problem was caused by the radiation and I would have to wait until radiation and chemo was over. Great, but I only had a couple weeks more and thought I could hold out.
Then, a couple of weeks before it was suppose to end, the radiation doctor told me the oncologist ordered three treatments more of radiation that would involve a probe into my vagina. The radiation doctor mentioned the usual side effects but didn't say anything about what would happen to me in the coming months. After the second treatment instead of urine trickling out of my bladder, the urine began to pour out.
. . .The next morning the oncologist came to see me and all I remember of what he said were these words: "Dialysis" and "Kidney failure." "What?" I thought, how can this be? My brain could not comprehend what he was telling me. There was nothing wrong with my kidneys. The nurse came into my room later that morning and I asked him about what was going on. He explained about the specific tests that reveal kidney functions. The Creatine level is the only name of the 3 I remember.
This next detail about the CT Scan seems to be one of the more troubling aspects of her care. As you'll learn, it turned out she did indeed have more extensive cancer and had Medi-Cal authorized the full body scan, it would probably have been detected.
April 2003 was relatively uneventful except for a CT scan to look for cancer. The doctor wanted to do a full body scan but the insurance would only authorize a scan of my pelvic area. No cancer was found. Still I had a feeling of dread and wondered why I wasn't back to feeling normal.
Her condition continued to worsen. I asked myself as I read how do human beings summon the strength to go on, but they do.
. . .With the continued feeling that something was wrong, on the last visit to the oncologist before the surgery I asked if he was sure there was no more cancer. As far as he knew no, that's what the tests said. Perhaps because of my asking about him being sure there was no cancer, when the oncologist was done with the surgery he felt around the inside of my body and found then removed cancer in the area of my diaphragm. There would be more chemo and radiation.
More surgeries, more radiation, infections, repeated hospitalizations and now this woman lives with both colostomy and urine evacuation devices attached to her body.
She believes certain errors were made during her care but on the whole she feels given the gravity of her situation, Medi-Cal came through for her. I'm not so sure. I don't know, I'm not a doctor, you decide.
Certainly it appears the fact that Medi-Cal denied her a full-body CT scan was a grave lapse. Since none of us have the ability to make medical diagnoses on the basis of an email as Dr Bill Frist likely can, it's impossible to judge whether her doctors also erred.
So how did Medi-Cal respond to a huge medical challenge?
Here are excerpts from her second email regarding her experiences as a Medi-Cal patient.
There were some problems with the insurance but probably not a horror story like Melody or what people go through when they lose or don't have insurance. I guess I should have figured out that insurance was your area of expertise after reading two of your diaries on Kos but sometimes--more so lately--I'm a little slow catching on to things.
Besides acknowledging her extraordinary courage, I'm especially interested in her experiences with Medi-Cal.
From my point of view my nightmare has become a legal one. The oncologist made a surgical error that required stents and, in turn, caused numerous kidney infections along with irreversible bladder and rectal damage. Legally, I don't know if I have a leg to stand on and crux of my dilemma.
. . .I have Medicaid. In California it's called Medi-Cal. It's the federal insurance program for the poor. When this all started I was on TANF, the name in California for welfare. In the summer 2003 I kept the same insurance when I qualified for Supplemental Security Income (SSI) a federal income program for disabled people that is part of the Social Security Administration. Health Net administers the Medi-Cal program that I am signed up for and after May 2003 they changed the subgroup to Preferred IPA. Before that date the subgroup may have been called Mainstream but I am not sure. Still, it was all under Health Net. Now for the problems with insurance:
. . .Drugs
The insurance would only allow generic drugs unless they authorized the drug beforehand but that was mostly impossible with two exceptions. The Duragesic Patch that took a couple of days longer than normal for insurance authorization and the same with the Kytril but with a twist. When I told the chemo nurse in early December 2002 about the vomiting from the Compazine and Zofran she said she would get Kytril for me. It took at least 1½ week to get the drug. It was during my weekly visit that she told me she got it. She said something to the effect "your insurance company is nasty" and the look on her face when she said that was that of wounded disgust.
. . .I asked for the "name brands" of Vicodin, Darvoset, and Percocet (all are for pain) at different times--February 2003, March 2003, and December 2005 respectively--but got the generic instead. Each of these name brands were given during different hospitalizations with no ill effects over a period of at least 4 days. At home, with the generic of Darvoset and Percocet, both made me vomit within two days. I remember the oncologist's nurse advocating in my behalf for the Vicodin but to no avail.
. . .Treatments and Tests
The insurance would take at least 2 weeks, sometimes more, to authorize surgery, treatments, or tests even if the oncologist's office would label it "stat." In mid February 2003 a stat request was sent for authorization for a sonogram and a test for my kidneys. A week and a half later the insurance had not approved the tests and I became very ill. The oncologist sent me to the ER with the needed tests written on a prescription form. The hospital did the tests, I was admitted, and started on Levaquin and other antibiotics. The next day the oncologist came to see me and used words "dialyses" and "kidney failure" because the toxin levels of my kidneys were extremely high. If the insurance had approved the stat tests in a stat manner perhaps hospitalization could have been avoided.
. . .At some point in early 2003 I was at the oncologist's office. I remember being told if I should get very ill again do not wait for authorization go directly to the ER. If I were in the hospital, the exact words were, "we can do whatever we want." Meaning, any test they felt were necessary would be done because no prior authorization would be needed. Doesn't that sound insane, wasteful, and much more costly than necessary?
. . . In April 2003 the oncologist ordered a full body CT scan to check for signs of cancer. The insurance would only authorize a CT scan of my pelvic area and no cancer was found. That was good news but in the months following something was not right and I didn't know what. Then in September 2003 I was scheduled for a related surgery and on the last visit to the oncologist before the operation I asked him if he was sure there was no cancer. He looked at the CT scan results and said there was no sign of cancer. After the surgical procedure was done the oncologist felt around the inside of my body and found and then removed cancer in the diaphragm area, just above the pelvic area that the CT scan checked. If the insurance had authorized the full body scan as the doctor wanted the secondary would have been found much earlier and my illness shorter.
. . .At the end of 2004 I was scheduled for surgery. Previously I could only drink half of 4 liters of Golytely--used for bowel prep--before vomiting. The oncologist gave me a prescription for Half Lytely that would be half the amount of liquid to drink. The insurance refused--I think because it's a new product--and would only approve the Golytely. I drank as much as I could and then went to the hospital anyways but the surgery was cancelled because my bowels were not cleaned out. The surgery was rescheduled and office manager arranged to have me admitted the day before--with insurance approval--so the Golytely could be administered through a tube placed down my throat and into my stomach. Drugs are great because after the tube placement I don't remember a thing until the nurse poured in the last dose. Isn't that nuts?? It would have been less costly and easier for both the insurance and myself if the Half Lytely was approved in the first place.
. . .Nursing assistance
The last surgery was in December 2005 and an attempt to reverse the colostomy. As with all my other surgeries the incision began to ooze and had to be opened and packed with gauze. A request was sent to the insurance company for a home health nurse to come to my home and care for the open wound daily. The request was made the Thursday before New Years and over the holiday weekend I had to change the gauze myself--an excruciating ordeal. The authorization did not come until Tuesday because the insurance offices were closed the day before. I was told a nurse would be out that day. No one came. On Wednesday I called the insurance company again and they said to call the nursing company. I did and they claimed they could not send someone out until they received final authorization from the insurance and could not get it because there was information missing on the size and depth of the open wound. They needed that information from the doctor. So, I called his office. I talked to one of the staff and gave her my estimates of the wound size (huge) and in turn she called the home health care company. Finally a nurse came on Thursday.
The wound was taking a long time to heal but slowly became smaller. After 1 ½ months the insurance stopped the home health nurse and I had to take care of the wound myself. It was early June before I stopped packing it. The wound did not heal as it had in the past after other surgeries with a scar down my abdomen. This time there is a "gully" or a "valley" instead of a slightly raised scar down the center of my stomach due to the insurance stopping the nursing care.
And after all this incredible woman went through, this was her final paragraph. What a unbelievably brave Kossack.
Eve, Considering how long I was sick my problems with the insurance were few. These are the ones I'm aware of but I'm also sure there are more that the ladies in the oncologist's office handled without even mentioning them to me. I know many people have nightmare stories and many might wish they had it as good as I. Me too. My experience with the insurance is nothing compared to many others and in particular, the home health care that many insurance companies do not provide, I've heard stories....
For obvious reasons, this Kossack has asked me to maintain her anonymity. If anyone wants to contact her, you can send me an email and I will forward everything. She'll get in touch with you. If I hear from lots of you, and I am unable to respond, please forgive me, but be assured I will forward everything.