Are you listening?
It has been nearly four months since I was first told I had kidney cancer and since, I have been dealing with bureaucratic bullshit to get the care each doctor says I need. Welcome to the Affordable Care Act (ACA) and the defeatist attitudes of doctors these days.
Some of you will bitch and badger about what I am going to say because in your opinion I have no “right” to healthcare and certainly even less right to complain considering the healthcare coverage I have is through the state, i.e. your taxpayer dollars. Others will moan and groan because they have found some grace in ObamaCare and will defend it to the death, but this is my story and it isn’t about politics, it’s about my right as a human being to live.
I have state-ran insurance coverage (Medi-cal) and it is a “beggars can’t be choosers” type of deal. In fact, in California where I live, medi-cal wasn’t available to adults unless they had dependent children at home until the passing of the ACA at the beginning of this year. In essence it became the overflow for people whose financial bottom line still wasn’t sufficient to meet the ACA thresholds and of course the mandatory law laid out by the President gave me no choice in the matter.
Great I Got It, But…
Initially I was relieved to have some kind of coverage after years of not and it had taken me nearly a year to get it the first place. The last time I was admitted into the hospital is when the coverage had finally kicked-in and it definitely made a small difference in how I was treated (for the better) and what tests were run to inevitably and finally have a real diagnosis after being sick for so long. Up until that point, I was lucky if they ran a basic imagining test or any blood-work however; that relief soon turned into a nightmare of red-tape hurdles that are indefinitely delaying treatment which means, each day my cancer continues to grow.
When I was discharged from the hospital after being diagnosed I was told I needed to:
A) get a primary care doctor
B) get a Urologist
C) get a nephrologist
D) connect with Arrowhead Regional Medical Center, the county teaching hospital and where I will be having my surgery because I only have medi-cal.
It took a week or so for Arrowhead’s Urological Surgical Dept. to return my calls. They explained that my doctor needed to fax the surgical referral etc to them and their team would direct my doctor to what pre-op tests, etc. needed to be done and once all that was done they would give me a surgical date….well, first-off, I played hell finding a primary care doctor that took medi-cal without the added IEHP (because I did not have IEHP which is like a secondary supplemental insurance) and there was not a single Urologist less than an hour or more away that accepted medi-cal, and they did so only if they had a direct referral from the hospital where I had been admitted. Luckily I did at least find a nephrologist (Dr. Shankar) at the High Desert Dialysis Center and was able to see him within a week of being released from the hospital. He was the same nephrologist that treated me in the hospital so he was at least familiar with my case.
A nephrologist is different from a Urologist; both have to do with kidneys, but a nephrologist is specialized and primarily deals with kidney failures and dialysis treatment — which is something I will eventually have to do (dialysis). The reason I have a nephrologist is not because I have kidney cancer in the left kidney, but because I also have kidney failure, aka Chronic Kidney Disease (CKD) of the right kidney. Anyhow, he asked me when I would be seeing a Urologist and having surgery. I explained to him what Arrowhead said and told him I was having a hard time finding a urologist and a primary care doctor so he gathered all of the information Arrowhead had requested and he sent the surgical referral himself.
The Primary Care
When I finally found a primary care doctor (Dr. Nashed) and had my first appointment a couple of weeks later I had to sign more releases and consents for him to get all of my hospital records with the diagnosis as well as the records from Dr. Shankar, my nephrologist. The primary doctor was to gather that info and also fax to Arrowhead with his own referral to show I did indeed now have a primary care physician which was a requirement of the state.
The Specialist, Again
Almost two months passed before I found out that Arrowhead denied the referral from my nephrologist and I didn’t find that out because anyone contacted me, no, I found out because I called the nephrologist asking what the hold-up was. I mean come on, you tell someone they have cancer and then let them twist in the wind that long? Who does that?
Anyhow, apparently one of the CAT scan reports (the 1st one done without contrast) had a handwritten notation that said the spot was some sort of complex cyst and needed no immediate follow-up. Arrowhead didn’t look beyond that report to see the updated CAT scan with contrast that said it was in fact a 2.6 cm tumor and not a liquid-filled cyst. So they denied it. I was told Dr. Shankar re-faxed everything including another referral to Arrowhead a couple of days before my call. I expressed that I was upset I had not been notified considering the delay. The nurse agreed and said she would make note so that I would be sure to receive some form of communication if there are any further issues.
More time passed and I still wasn’t hearing from Arrowhead and given my surgical date. I was warned in advance that Arrowhead’s Urological Surgical Dept. is only open 3/days a week and that I would be on a waiting list, but this was getting a bit ridiculous.
Yesterday I had a routine nephrology appointment. I have been feeling quite unwell for about a week. While discussing this with the doctor he asked me when my nephrectomy was scheduled. I told him I hadn’t been scheduled yet. he asked what my insurance was again and when I replied that it was medi-cal he said, “Medi-cal? That’s why. You may as well not have insurance” and walked out to talk with his front desk staff. When he came back in he told me Arrowhead again denied the surgical referral.
Yep. This time because somehow I suddenly and magically now had IEHP on top of my medi-cal which took away his authority to refer me and as such everything now needed to go through my primary care doctor and start anew because I needed to have another CAT scan with contrast and yet more blood work which all had to be ordered from the primary.
Seriously??? After almost four months?
To make matters worse, after demanding a copy of every piece of paper in my records there I noticed the date of the last denial. It was over a month ago! Did they call me and tell me there was a problem? No. Did they call me and tell me I or anyone else needed to do something? No. Did they call me or communicate in any way to me that there was a stall in my treatment? No.
Are you kidding me? I went off the charts I was so pissed-off. I flew out of that room straight to the front desk and first blasted them. I asked them how dare they not contact me and how dare they just let this sit with zero action taking place. I then turned on the nephrologist himself and made sure he knew how I felt about he and his staff’s negligence in the matter. I left and headed straight to my primary care doctors’ office.
Before I tell you what happened next, let me explain something about IEHP. I had no choice whether I received it or not. I did not sign-up for it, nor authorize it in any way. Last week I received a card two days in a row from them with no explanation other than here’s my card. Of note, each card has a different doctor’s name on it and neither were any of my doctors.
The Primary Care, Again…
When I arrived at my primary care doctors I found out they had not faxed anything at all to Arrowhead and were still waiting for records from the hospital I had been admitted at. I asked how many times they had contacted that hospital. The answer? they only sent the initial request which was nearly four months ago. Did they follow-up with them? No. Did they contact me? No.
Of course that was just insult to injury and I was livid. I demanded — without an appointment, to see the doctor and said I would not leave until I did. I gave them hell. At one point I seriously thought they were going to call the police on me.
The thing is this, I have been told by my doctors that once a kidney tumor reaches 3 cm it is almost always malignant. Four months ago my tumor was 2.6 cm. We do not know the rate of growth as I have not had any imaging since. It may be the same size, it may have crested the 3 cm mark or maybe — God willing with the help of the Rick Simpson Oil, maybe it shrank or disappeared altogether. The point is, we don’t know and every day that it may be growing takes away any advantage I have against it.
When my primary care doctor finished with the patient he was with when I arrived he called me to the back. At first he had an attitude with me because all he understood at that point is that I was pissed off and raising hell in his busy waiting room. It took a bit before he would listen to what I was saying and see why I was so upset. When he finally humbled himself he realized this was an issue and immediately started writing new orders for the tests so that I could get them done this week so he could resubmit everything to Arrowhead. I left that office still very upset, but at least I felt somewhat heard and had forward steps now in place. That all came to yet another halt first thing this morning when Dr. Nashed’s office called me to tell me that while processing the new orders and referral for Arrowhead they saw that IEHP had assigned me a different primary care doctor altogether and that they (my current primary care doctor) cannot do anything further unless I contact IEHP and request to be switched to my own doctor (who IS in their system).
Not Even Joking
I hang-up from my doctor’s office and call IEHP. I was given two choices, accept the new doctor the had assigned me and wait a few weeks to have my first appointment and start the whole surgical referral process all over again with them or go ahead and switch to the doctor I was already seeing, but that will not take effect until Novemeber 1st? Guess why? Because I went into Dr. Nached’s office yesterday, even though I didn’t have an appointment and should not have been charged etc.
What does this mean? It means that my primary care doctor cannot do anything with me or the referral now until November 1st. Then they can re-order the tests and new CAT with contrast (again) and the blood work (again) and then wait for that to come back so they can resubmit the surgical referral (again) and now I am left to wait (again).
I can only hope and pray that the CBD oil is helping and that the cancer is not growing. This is America, land of the sick lost in a system never meant to be of service.
Story cross-posted on Challenging the Rhetoric. SEE RELATED background on my illness and what I am doing about it: