Wednesday November 14, 2007 10:36 PM

I GOT THE SCRIPT FOR JIMMY'S TEST! He had Dr. Hill tonight, who's a woman. There's four doctors working out of this practice. Jimmy only saw Dr. Hill once...a few years ago when we first moved to Sicklerville. The doctor that poo-poo'd me, Dr. Levy, is no longer with their practice. Jimmy was due for some shots. I brought Jim with me, and when the doctor walked in I told her, "I need to talk to you about something without Jimmy here because I don't want him to get S-C-A-R-E-D." Thank God Jimmy isn't a good speller yet. So Jim took Jimmy outside for a little bit. Dr. Hill was a sweetheart...she didn't know much about pheos, so I had to educate her. The first thing I asked was, "What's the first thing you do when you get up in the morning?" And she said, "Pee", and I said, "EXACTLY!" I told her the story in 1000 words or less and when I got to the part about Jim going normally like the rest of us now she agreed that Jimmy should be tested. I had to tell her the name of the test. It's called the 24 hour urinary catacholamines and metanephrines test. She also gave me the names of two geneticists. I did a little research and found that the most likely gene mutation in someone who's had a functional paraganglioma in the neck (that's just another phrase to describe what Jim had) is a "germ-like mutation in SDHB, C, and D." I'd like to find out if Jim and Jimmy are carrying this thing. I also told Dr. Hill about how difficult it was to get Jim into an endocrinologist. She couldn't believe it. I told her that as a doctor, other doctors will give her courtesy, but the layperson gets BUPKIS.

Now that Jim's ordeal is winding down, we've been swapping some stories about each other's experience at Lahey that we can laugh about now, but were not funny at all at the time.

Jim's funny story: While having a bad reaction to the sleep-aid Ambien, he was convinced that the nurses were part of a military conspiracy. The military was apparently doing experiments in hospitals manufacturing t-shirts that made people cough, and Jim was one of their test subjects. He spent one full night trying to pull out all of his apparatus and escape the hospital. The nurses had to keep watching him, but luckily he never got fully unplugged and out of his room. It got so bad that the nurses turned the alarm on in his bed. They told him, "If you get out of bed, the alarm will go off. Why are you trying to get out of bed?" They stopped giving him Ambien after that.

My funny story: The night before Jim coded I had given him a couple of Listerine pocket pack strips because his breath was so bad. When we arrived at the hospital and he was bleeding out of his burst carotid artery, not only was I panicked because I was convinced he was dead, but I also thought I killed him by the caustic action of the Listerine pocket pack. I thought the Listerine had somehow seeped through the stitches in his mouth and pooled in his neck causing his carotid to be eaten away by mouthwash. And how would I explain to everyone that it was all my fault?

Monday November 12, 2007 10:08 PM

What bullshit I'm going through trying to get Jimmy tested for a pheo. Let me back up here....when Jim went to Dr. Altimore at Deborah Heart and Lung and had a 24-hour urine test, Altimore suspected a pheo because of Jim's off the charts adrenaline numbers, so they gave Jim a MIGB scan...that's a type of nuclear scan...but since pheos are usually on the adrenal glands they just scanned Jim up to his neck, and they couldn't find the tumor. At that point Dr. Altimore told Jim to see an endocrinologist because pheos were more in their area of expertise. Jim must have called ten endocrinologists in our health plan. Some said they would call him back and never did. Some couldn't get him in for at least six months because he wasn't a current patient. One even told him that if his MIGB scan showed nothing then they wouldn't see him at all. The only one he could get into was Dr. Horowitz in Cherry Hill....he got an appointment in four weeks...and she turned out to be a very, very good doctor, so in the end we were lucky.

So now I'm on a quest to get Jimmy tested. I called Horowitz's office first. She doesn't see children. Then I found three pediatric endocrinologists listed on Thomas Jefferson's website, so I called one of them. The receptionist hemmed and hawed and then put me on hold. She got on after a little while and said that she spoke to the physician's assistant and maybe I'd need to take Jimmy to a renal specialist, but she'd have the doctor called me back. This was on Friday. Three guesses whether they called me back or not and the first two guesses don't count. Yeah...BINGO. This just demonstrates how doctors don't have a CLUE when it comes to pheos. They never see them because they're very rare. Did you know that 50 percent of pheos are diagnosed at autopsy? That's a damn shame. Jim said that worst case scenario, if we have to take Jimmy up to Boston to get him checked out then we will. I want to try a few more avenues before we resort to that.

I scheduled an appointment this Wednesday with Jimmy's pediatrician. This is a group of four doctors. One of them poo-poo'd me when I asked about getting Jimmy scanned. What I plan to do is to bring my information about pheos with me and DEMAND that they write a script for the 24-hour urine test. I'm not leaving the office without it. Then I want a copy of the results sent to me DIRECTLY so they don't sit in some doctor's file somewhere and I never get a call about them. Jimmy needed a flu shot anyway so the visit won't be a total loss if I don't get my way. But you guys all know how aggressive I can be when I need to be, so I'd lay odds on me winning.