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Thread: Question About PCPs

  1. #1
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    Default Question About PCPs

    I want to get your opinions on what I can do about my PCP care. When I first moved here I saw a PCP at a local branch of JHU. The office was huge, and I always saw a different doctor so I didn't establish a good connection with anyone. (And the office made tons of mistakes)

    I finally found a very good local PCP outside the JHU system. The local hospital she deals with is awful. And if she wants an x-ray or something I'd have to get it done locally and bring it to JHU. My chest x-rays need to be compared to prior films, so it doesn't do much good to get a local x-ray and have her treat me based on it.

    Because of all this, I rarely see her. I don't have much that a PCP can handle. I like her, she has a healthy respect for Wegs and we work well together. Her office is very good at getting me in the same day, too. I just have a hard time thinking of her has my primary care doc, since I rarely go there for care. She doesn't even know when I'm hospitalized, since it's usually at JHU.

    JHU has PCPs but it's 1.5 hrs from me. I'm there once a week for my therapist. I could get all my tests done there and it would make life much easier, knowing Dr Seo and my other docs could access their notes. I asked Dr Seo what to do and he said it's best to have a PCP close to you. I understand his logic, but it's just not working out the way it normally does.

    I had such awesome PCPs in Arizona. They were my main docs and knew everything that was going on. Dr Seo winds up doing a lot of PCP-type things for me, which he's not thrilled about. He wants to be the Wegs doc, not the Everything doc.

    I'm thinking about checking out the PCPs at JHU and if I like one I would become their patient.

    What do you guys think?

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    I have seen the same PCP for twenty years. He is a nice man, but lately has been getting "short" with me. I don't know why. I had visit in Jan. 11 at the behest of his staff to follow up on a med renewal. He looked at me and questioned me why I was even there, who is treating you anyway, he said. He finally calmed down and I do have a follow up in April for a physical, but I don't understand his behavior lately. Point being, I guess, is what to do? Throw away a twenty year relationship or try to regain the original comfort level. I don't look forward to the next appt, and neither does Debbie.
    Dale

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    In your case, Sangye, I would go with the JHU doc, especially since you are down there for therapy. Better to have it all in one place.

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    Sangye, I would of course continue going to JHU since you have to with everything else. Can you have all of your records faxed/mailed to your PCP that lives close to you? That way she would at least know what is going on with you? Maybe she can consult with docs at JHU as well.
    Otherwise, can you ask for a PCP at JHU?
    That is basically what I do with my pulmonologist, ENT, and PCP that all live in my town. I see them whenever I need to and I have all records mailed to Mayo and my doc at Mayo will call with questions or advice or whatever. I still go to Mayo for my follow up appointments.

    Good luck and that is great that you have a PCP that is close to you that you like a lot!

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    Thanks guys. I think I'm going to wait until the rtx treatment has me back on my feet and then I'll check out JHU's PCPs.

    Dale, I suggest you ask the doc directly if something has changed between you without being confrontational. I had to do this a couple months ago with Dr Seo, actually. He seemed increasingly exasperated with me and it was really affecting our communication and my care. So I finally just had a conversation with him. I explained how I felt and was open to hearing his side, too. I told him I felt confident we could get back on the same page, but we needed to figure out the sticking points first. We did it. Now we're good again.

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    Sangye, that is a good idea to wait and see how you feel after your RTX. I think either way is good.

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    My counselor pointed out to me recently how difficult it is to be a PCP for someone with long term chronic illness. What motivates many to become doctors is that great feeling of figuring out a problem, dealing with it and seeing the person go on to become healthy. When you have someone who never seems to get better it could be very frustrating. It helped me to adjust my thinking and be sure and give my doc the kind of feed back that might replace "I'm healed and I will probably never need to see you again"

    One version is "I'm so grateful to have someone like you who can take the constant challenge of this illness and stay positive. I want you to know how much I appreciate your help even though a lot of the time it seems like I'm not getting better. Thank you."
    Since my illness doesn't always give a positive response it becomes more important for ME to give one to keep the doctors spirits up.
    Having said all that, I am struggeling with PCP issues also - been with the guy for 32 years. I think a lot of the trouble is that the medical system has changed and put a lot of pressure on him to get through patients quickly.

    I travel almost two hours one way for visits and I am still activly searching for someone local to work with. I thought I had one for a while but he ended up making a serious mistake in my care and I can't trust him anymore. It seems to me that good PCP's are becoming as rare as a specialist.

    Sangye it looks like I may be doing RTX treatments about the same time as yourself. Best results to both of us.

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    I hope your Wegs goes back into a long remission, Kirk.

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    Well guess what? I finally got the PCP I wanted at JHU (Dr Heather Jones). It took a couple months. Her practice was closed (ie not accepting new patients). The only other PCPs available were residents and neither Dr Seo nor I thought that was acceptable. Not only would they lack the experience I need, but they don't stay long. I want a PCP for the long haul.

    Even though he didn't know her, Dr Seo wrote her a letter asking her to take me on as a new patient. He didn't hear back so I assume she didn't get it. My attempts to speak to the clinic manager were fruitless. A Weggie from the support group I used to belong to sees Dr Jones and loves her. A couple weeks ago she asked her if she'd be my doc. Dr Jones said of course, and said I should call the office. Well, they had no idea about it and wouldn't budge. Finally, I made an appt with a resident just so I could get in the clinic.

    I had the appt yesterday and explained my situation. She went and asked Dr Jones and I got scheduled to see her in a month. I don't have any pressing issues. The resident took a long time with me and got a very detailed history, which will get passed on to Dr Jones.

    It was actually great for her, because I told her lots of things about Wegs that only Weggies know. I explained how variable it looks. I told her how important it is to make sure a Weggie gets to a Wegs specialist or consults with one via the VF. Lots of things I've learned from my own experience and from all of you.

    So even though it was a long day and a lot of expensive gas, it was worth it. Maybe one day she'll dx Wegs and save someone's life. She was a wonderful doc with a great bedside manner. It's always great to see someone like that entering the health care profession.
    Last edited by Sangye; 03-27-2011 at 03:19 AM.

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    I think that some doctors suffer from something that affects us all - Old Age!

    My local GP has been with me for 20 years and has changed from young and enthusiastic to just going through the motions. This is fine for me because I only use him to supply repeat prescriptions or to give me a referral should I need one and I don't think he can be bothered to argue so just does as I ask. However, I'm thinking of changing to a younger edition because I don't think it is good that he shows little interest in how I am getting on.

    My old Wegener's specialist has now retired, but he did not seem to suffer from any lack of interest and seemed to become wiser if anything as the years passed.
    Last edited by Jack; 03-27-2011 at 04:25 AM.
    Jack

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