Thursday, April 28, 2016

Illness and Dealing With The System (UPDATED)

I have a Medicare Advantage Plan through Presbyterian Health Care in Albuquerque. Until yesterday, it seemed to be fine. I got care by competent professionals when I needed it, and though the clinic is 35-40 miles away, it's not too inconvenient. Co-pays -- so far -- have been reasonable.

As I've mentioned previously, I'm currently being treated for rheumatoid arthritis and pneumonia. Rheumatoid arthritis can be very painful and debilitating, whereas pneumonia can be lethal, especially for an elder like myownself.

Treatment for RA has consisted of diclofenac twice a day and high-dose prednisone for five days, with a follow up by a rheumatology specialist. That follow up has not happened. I was supposed to receive a call from Rheumatology setting up an appointment, but none came. The prednisone treatment ended April 18, and for the next week or so, the pain I'd previously experienced was more or less controlled. But yesterday, actually the day before, the pain started returning, and it became so bad I could barely stand it. It was at times worse than before I started treatment.

I had been given a five day course of antibiotic treatment for pneumonia, half the time-period of previous treatments. It seemed to control the symptoms, but then not. At all. It did not seem to me that Azithromycin was an effective treatment as I still had a severe cough, chest pain and compression, and difficulty breathing.

So I contacted my primary care physician reporting that I was experiencing returned or persistent symptoms of both RA and pneumonia and requesting advice.

The response I got was... odd. "Were you able to set up an appointment with the Rheumatologist?"

The answer, of course, is No. I replied that I had never received a call from Rheumatology and I had no contact info.

Shortly, I received a text telling me that Rheumatology had called me and left a message for me to call them back to set up an appointment. Apparently I hadn't received the message for some reason. Contact information was provided and I was encouraged to give them a call to set up an appointment.

This I did promptly.

Hm. I spoke to a very nice person who said that in essence there are are no appointments available until November at the earliest. The doctor who I was told to contact is not accepting new patients at all, and the only rheumatologist on staff who is accepting new patients won't have an appointment opening before November. I explained that I'd been informed by my primary care physician that someone had tried to contact me to set up an appointment with the doctor who isn't taking new patients but that I had not gotten the message. "Let me check," she said. A few minutes later, she said there was no record of anyone from rheumatology trying to contact me and no record of an attempt to set an appointment time. Interesting.

I asked if it was possible that someone had tried to contact me but called the wrong number (I get calls periodically from doctors offices and dentists for other people, sometimes because the caller has misdialed) and she that they only have the one number for me, and there is no record of anyone from rheumatology trying to contact me at any time.

I explained that the nurse told me there was, so it was something of a mystery. She said she would look into what happened and get back to me, because it certainly seemed odd to her, too.

I then texted the nurse who had told me that someone had tried to reach me from rheumatology with the information that they have no record of it, and I had checked through my voicemail messages for the last month, and there was no message from rheumatology.

Meanwhile, the pain was becoming excruciating while we've tried to get this resolved. As it happens I have a few prednisone tablets from the first prescription when I was told I was taking them wrong, and I took one last night -- because in a pinch, one tablet will control the pain for about 24 hours. Doctor told me not to take it that way, but I have no other pain relief option when the RA pain comes on the way it has, and as the issue with rheumatology follow up seems to be a mess for the time being, as they try to sort out what happened with my non-appointment, I used what was at hand.

We'll see what happens. At least the pain was controlled overnight, and that is a major relief.

Meanwhile, I still have pneumonia symptoms which I've reported and asked for advice on, but so far, there's been no response to that request. At all.

The system apparently isn't set up to answer two questions in one message or to respond to more than one issue at a time.

I'm learning, I guess. But if I didn't have the prednisone, I would be in serious agony with no relief at all, and the persistence of pneumonia symptoms after treatment ought to be something of a red flag -- but apparently it isn't.

UPDATE: Despite systemic resistance, I was able to set up two appointments to deal with immediate issues. The first, yesterday, followed up on pneumonia symptoms. Turned out my condition was worse -- gee, ya think? -- and I needed and was prescribed a stronger antibiotic along with more prednisone in case the chest pain becomes severe.

The next appointment is Monday for the rheumatioid arthritis. Since there apparently is no rheumatologist who is accepting patients within a reasonable time frame (at least none that I know of), it will be up to me and my primary care physician to find an appropriate treatment for as long as it takes to get in to see a specialist -- which apparently is going to be months.

Prednisone does work. Even, it would appear, in low dose, which I've tried since getting prednisone for chest pain yesterday.

My co-pay for the stronger antibiotic is quite high (close to $100). It may be that the earlier ineffective treatment -- which had a very low co-pay ($4.00 or something like that) was intended to keep my costs reasonable. I don't know. But it didn't work, and at first, the staff at the clinic ignored my repeated requests for relief. Then something happened, perhaps when I called up again yesterday morning, and things changed.

The system may be resistant but apparently it's not entirely non-responsive.

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