Sunday, May 11, 2008

Fiasco With Doctor at University of New Mexico Hospital

The noise, noise, noise, NOISE!

Ah, the joys of living in a small state with a limited number of doctors for the population.

I have been having almost daily attacks. The constant trigger in my life that I can see is my hypoglycemia. My food diary shows no other clear-cut triggers. It was my almost daily cycle that had one asshat neurologist tell me that I was a hypochondriac and that I was not having any migraine events at all.

For a while the Depokote seemed to be working. Along with that I do take Magnesium and Feverfew. Voltarin is my rescue drug.

This past few weeks, however, have been really, really bad. I collapsed once at work. Another day, I went home to sleep. My wife took me to the physical therapist. When I got in I collapsed in the lobby. After I recovered some, I found that my PT (whom I adore) had called my neurologist in the Cleveland Clinic. He was on the phone with me in minutes. He suggested a possible infusion to help break the cycle. He also suggested altering my medications a bit. He asked if I could come on in and see him in the next week. Cleveland is on the other end of the country from the Atomic City. Yet here he was scheduling me ASAP.

I told him I would prefer to see my local neurologist at the University of New Mexico Hospital which is only 90 miles away. I gave him the name of my local doctor (who seemed competent but I have only seen her once). He said he would call her. He did. Several times over the next week. He emailed me and said he never did reach her.

I called UNM the next day for an appointment. The earliest they could get me in was July. I booked it. After a few days of feeling like crap I called back in. The scheduled me for August. I whined and protested. I told them (begged them) that I would be at UNM to see my endocrinologist in 2 weeks, could I see my neuro on that date. They scheduled me for a date very early, even earlier than with my endocrinologist.

That was a double-edged sword, both good and bad. UNM did bend over backwards to get me in (after asking what I should do since passing out was getting old). The good news was I was actually getting in within a week.

The bad news is that they picked the worst possible day to do it. I accepted anyway.

This last week I have been a single father. My wife, Li, has been in Louisiana working with a mission's group putting together aid packets for natural disasters. I was watching the girls. On Friday, the day of my UNM appointment, I had to leave very early to get to Albuquerque by 9am for my appointment. I would not be able to get my kids off to school. They were on their own (they did fine...I have good girls).

On top of that, I would now miss my daughter's orchestra concert. She ended up performing with neither parent there to applaud her hard work. And she did work hard.

I got to UNM on time for my 9am appointment. The receptionist, a pleasant young lady, informed me that my appointment was moved to 10am. No one notified me. I could have gotten the girls off to school.

I wandered around a bit and was back at 10. Workers were in redesigning the modular furniture of the reception area. Here I was in full blow basilar migraine attack (Full Bobblehead Engines!) and there was the hammering, drilling, banging, movement, yelling, noise. I felt like the Grinch. Finally, I got up and went in and asked to sit in an exam room. Again, the receptionists and the nursing staff were great. They quickly triaged me and had me wait.

After an hour I was still waiting. My doctor was no where to be found. They paged her. No reply. After a while they told me they found here. She was home with a sick child. I waited for another doctor. Finally at 11:55 (I got there by 9am) he came in. The first thing out of his mouth was, "I did not have time to look at your chart. Also I need to be somewhere at noon. You got 5 minutes. Go."

I was not a happy camper.

He recommended I increase my Depakote, get a kidney test (which I had already done) and bye-bye! I went to rebook with my original neurologist. UNM had gracefully canceled my July appointment (again without calling me) and now had an opening in September.

No good.

I went back in, sat down with the nurse, and slowly in my slurred speech explained I was passing out, having almost daily attacks, was up since 5am, drove 100 miles alone to get here, could not get my kids off to school, missed my daughter's concert, sat in the construction zone, had a 5 minute drive-by consult by a doctor who wanted to brush me off and get to lunch, had numerous appointments moved or canceled with no one calling me, and now was on a priority list to see my doctor (whom I desperately want to get some sort of professional relationship going with) 4 months later!

The nurse was speechless. I was polite, quiet, reasonable, and professional. I was angry at no one. Crap happens. My doctor's kids get sick. That happens. I am okay with that. I just want to get in. And I want my doctor to speak to my neurologist in Cleveland so they can agree on a treatment.

I go back in to UNM in 2 weeks.

LESSON OF THE DAY Keep pushing. Be polite but firm. You guide your own treatment. Do not accept the brush-off. Murphey's Law sometimes comes into play, and doctor's offices are organized chaos. Everyone feels bad. Everyone is cranky. You can often force the issue but remain calm and professional. Go to the nurses. Do not give up.

The good news is that I felt great yesterday and am now off to the gym today. Happy Mother's Day all!

Bobblehead

2 comments:

  1. Anonymous11:34 AM

    Oh Bobblehead I feel for you! Good good good job! I love what you said. Keep pushing. Don't get mad at the staff. They are coping with organized chaos. It is so hard when we feel so sick and vulnerable to cope with the chaos and keep standing for what we need. You did it!
    - megs

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  2. I am very impressed with your levelheadedness in the throes of your migraine with all that was falling apart around you with regard to your treatment. Unbelievable... I hate to hear of such incompetence, unprofessional behavior, disregard for patients, etc. Kudos on being your own best advocate for your health.

    I hope you get the best treatment available soon.

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