Wednesday, October 3, 2007

A little something extra

I had to add my two cents to Chris' post. The person that I saw at Dr. Bienvenu's office is an LPN, not a PA. My ear does freaking hurt. I know why kids weep when they don't feel well. They don't have the words to articulate what is really happening. They can say, "hurt" and howl in frustration when the grown ups don't understand. I can articulate the pain, but it hurts too much to do so. There is a reason we don't remember childhood illnesses. We're better off not remembering. I know I'm lucky to be able to complain about this. I almost died because of an internal malfunction. I suspect that I'll be reliving all of my childhood episodes and I'm not exactly excited about it.

I've complained about my throat for the last three weeks. I brought it to the attention of my local doctor repeatedly. Yes, a sore throat generally doesn't mean anything in a normal person. I take meds that suppress my immune system. I can't fight off the things a "normal" person can. The team at MDA jumps all over me at the slightest sniffle. If I sneeze during an appointment, I get a nasal wash. Do I have to fall on the floor and have a flailing tantrum to get my local doctor to take me seriously? I am by no means a hypochondriac. I thought I was being a wuss last December when I couldn't handle my regular life. Ha, little did I know I had leukemia.

Yes, I did have a breakdown yesterday. I couldn't stop crying because I was so angry and frustrated. It was absolutely demoralizing to go into the local office only to be told that I could be referred to an infectious disease specialist. Are you kidding? You could have saved me a trip and just told me that on Monday. Instead, I was told to come in on Tuesday to have blood drawn. It was a complete waste of my time and money. Don't patronize me and don't take me lightly. By the way, try listening to the patient. I detailed my problem on Monday. My throat still hurt and I had a serious ear ache. The LPN was actually surprised when I asked what I should do about the ear ache. Yes, genius, I do know that the ear and the throat are connected. That little bit of knowledge is what made me wonder about the infectious disease specialist.

I should have been referred to an ENT. I wanted to see an ENT. Unfortunately, I don't get to just call whomever I'd like. I have to let my primary doctors know what's going on and then follow their advice. This is all based on a desperate want to live. I don't want to force the marrow out of my bones because I did something stupid. My doctor at MDA is johnny on the spot with treatment. Unfortunately, she's 5 hours away. She's always prompt with calling me back and she's always thorough in her questions. So now, Chris and I have some choices to make about my local treatment. Do I assemble a team of local doctors to treat my various ailments? How can I guarantee that they'll communicate with one another? I've already had several examples of how lack of attention to detail can make things worse. I happened to have read the packet that my transplant doctor sent over to my local oncologist. I suspect that members of his team have not. Trust me, I know.

Please forgive my rant. I'm tired of feeling awful when I know all of this could have been cleared up three weeks ago. I sincerely hope that I don't blow up at my weekly appointment tomorrow. It would be a little embarrassing to be escorted out of Mary Bird Perkins by security. There's always a first time.


Nancy said...

OMG! Yes, come to Southern California. I could probably help find Chris a great job... lots of aerospace companies here... Boeing, Northrop, Raytheon. I know people at all of these companies. City of Hope is just 30 minutes up the freeway from me. Love to have you nearby.... I can't imagine what you are going through.. sounds horrendous and I don't think I could tolerate that at all post BMT. (Traffic here is another story).. Hang in there girl. Hope you feel better ASAP!
love ya both, nancy

Anonymous said...

Change your primary care physician. Michael Guercio at Ochsners is great. My favorite was Karen Miller. She is affiliated with OLOL. Here's her info:

2645 Oneal LN
Baton Rouge, LA 70816
(225) 751-5161

Good luck!
Love and Prayers from out west.

Anonymous said...

Ann, I feel like this is my fault! What if coming out to dinner made your throat worse? I really hope you get better (and get better treatment).

- Paige

Anonymous said...

Hey Ann and Chris,

I had a pretty bad problem with chronic sinus infections that were really interfering with my daily life for a while until I saw Dr. Jack Breaux at the Surgery Specialty Center on Bluebonnet. He noticed a deviated septum right away and I was able to have surgery to fix it. He is very experienced and is a great guy that wants to help his patients. If you can get referred to him I would definitely recommend you go see him.

- Jordan Roberts