Thursday, June 11, 2009

More on What's Wrong with the System

Well, the doctor who ordered the CT scan and told her nurse to tell me I have a hernia finally called to tell me that I should have surgery as quickly as possible. This was after I told my primary care physician that I hadn't heard from her, and also after I faxed her a letter with a status report on my discussions with my IBD expert in New York. And after her nurse said she would call me -- four days ago.

She complained because the gastroenterologist in New York isn't returning her calls. I explained (again) that I've been in touch with the New York doctor, and that she's started me on a new medication. I think she was annoyed that the New York doctor responded to me rather than to her, and that I seemed to have better information than she does. So I said "I do my own care coordination." She said "quite effectively, too!"

Why is this annoying to a doctor? Shouldn't she be glad that I take the load off of her shoulders and make sure all of my doctors are on the same page? She complains that the doctor in New York doesn't get back to her, but also complains that I've gotten through to the doctor myself? What would be the right thing for me to do? I guess just sit patiently and wait and do as I'm told when I'm told?

I really don't understand this approach to practicing medicine, an approach that involves a passive patient who does what she is told and nothing more. When was this doctor planning to tell me that, in her opinion, I need to have the hernia repair done quickly? If she's all that worried that bowel will get stuck in the hernia (which is really a hole in the abdominal wall) and I will need emergency surgery, why didn't she or her nurse tell me that on Monday?

Well, I'm not ever going to be the passive patient she wants me to be. I don't do passive. It's my body, my problem, my pain, my hernia.

Anyway, now I have an appointment to see the surgeon on July 6. I have to go to Nashville on August 8, so I can't have surgery before that, but I suspect it will get scheduled shortly after that.

And for those of you who were with me for my last surgery, I will blog it all again -- every detail -- so you can see how many times the system messes up, whether it be my insurance or an infection or anything else that can go wrong.

I think perhaps my annoyance is a way for me to deal with the sadness. I don't want to have surgery again. It's barely been a year since the last one. The whole thing stinks.

I think I'll go have a good cry. Jennifer


  1. Hi Jennifer, I want to let you know that your examples and your difficulties made me think hard and long. First, you've given me some strong encouragement to ask a lot of key questions about my health with severe asthma, diabetes, and chronic pain. My allergic conditions are so severe that I have reactive leg lymphedema because my body is pouring so much fluid into my system.

    The attitude I am getting right now is that they want me to be self-sufficient and that I shouldn't be taking up their time with the manual lymphedema drainage message. Never mind that my left leg and sometime right leg are hugely swollen. As soon as they turn me loose to be independent my legs resume their swelling. But just staying even and pretty well under control is not good enough for them.

    I just don't understand this urge to stop helping and treating chronically ill patients. This desire of the vascular folks is subtle, but they are trying to stop the massage and I don't know where I'll turn to. I've gotten a reprieve recently when they tried to cut me off and my legs dutifully started to swell 4 days after my normal cycle of a week between massages. So, I've proven the need to get 5 massages at twice a week, but after that is over they'll try to "make me independent" again. I know I'll have my usual arguments with them about progress and needing help. These will fall on barren ground, I'm afraid.

    I mention this because this is the type of partnership I don't want when they know they are helping me to stay steady, but want to cut me loose anyway. And think what I'm saving them by doing my exercises and recumbent biking and doing well enough not to have an amputation and all the expenses that involves. The massages only cost $5,000 or so per year, but they'd rather be looking at an amputation for me. I just don't understand this way of thinking at all. This is from great doctors too who communicate well and are caring. They don't want me to be a team member. They want me to be the whole team.

    Any ideas or suggestions would be appreciated. Thanks for all you do here too and your excellent letter to the Health Care Reform legislators. Please take care to weigh the importance of that hernia. It may call on you to move or even cancel that August meeting. After all, you are far more important to have around than even an important meeting. Your friend Frank from Minnesota.

  2. Frank, my best suggestion is that you keep doing what you're doing -- advocate for yourself so you keep getting the care you obviously need. $5000 in massages is a whole lot better AND LESS EXPENSIVE for society than amputation. So keep doing what you're doing, and keep making the doctors do their jobs.

    And tell your story at the White House website on health care reform. They need to hear from you. Jennifer