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Sangye
02-01-2011, 03:06 PM
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?

renidrag
02-01-2011, 09:11 PM
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

JanW
02-02-2011, 01:18 AM
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.

Brooke
02-02-2011, 01:28 AM
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!

Sangye
02-02-2011, 02:01 AM
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.

elephant
02-02-2011, 12:06 PM
Sangye, that is a good idea to wait and see how you feel after your RTX. I think either way is good.

me2
02-02-2011, 01:06 PM
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.

Sangye
02-02-2011, 02:06 PM
I hope your Wegs goes back into a long remission, Kirk. :smile1:

Sangye
03-27-2011, 03:17 AM
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.

Jack
03-27-2011, 04:22 AM
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.

drz
03-27-2011, 05:35 AM
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.

I think it is important to have a doctor younger than yourself or at least one that seems in good health and apt to be practicing for awhile. The last thing we need when we are old and in failing health is to have to search for a new doctor because you regular doctor either retired or died .

drz
03-27-2011, 05:46 AM
I think the best doctor for us with a long term chronic disease might be the doctors that can handle being a Hospice doctor. They have learned to accept illness and that they can't fix everyone, but they can help us function at the highest level we can as we journey along life. During our ups and downs they try make us more comfortable and be supportive generally.

The pressure to see more patients in less time for economic reasons and their decreasing payment schedules from insurance and Medicare really have negative impact on our quality of care, but there is little we can do about that except to try organize and prepare for our appointments so we don't waste time and can get covered what is most important.

Sangye
03-27-2011, 06:02 AM
I agree that it might be time for you to look for a new GP, Jack. I always told my patients that a doctor should look at you with "new eyes" at every visit. There is something to be said about knowing your body, but not to the degree that you tune out new info.

I also agree with you guys that it's good to have younger or middle-aged docs. I like that Dr Seo is in that category. Dr Jones, my ENT and my eye specialist are young, too. I plan on living a very long life with Wegs and hope to have them on my team for as long as possible.

JanW
03-27-2011, 06:46 AM
Agree Sangye. My doc is a couple of years older than me (so younger than 50) and my ENT is around 50, or a little older. Both born and bred NYC-ers so assuming I stay here most of my life, I should be set!

pberggren1
03-27-2011, 08:35 AM
Hey Jack, your previous Wegs doc was Dr. Adou, right?

Sangye
04-26-2011, 09:49 AM
I finally saw my new JHU PCP today. She's great! I'm so glad I made the decision to move my PCP care there. Her being able to look up prior labs and clinic notes makes everything much more efficient.

She's concerned (as am I) about my increasing weakness, exhaustion, and tons of joint pain. I'm barely able to function, feeling totally wiped out every day. It's gotten worse each week. I'm having some GI issues too, so we're gonna test the poop and make sure nobody's living in it. I don't mind being a home to billions of good bacteria but beyond that, there is just no room.

She agreed that the 2 rtx infusions might not be enough for me but wants to rule out other issues. All in all I feel very safe in her care.

Chris G
04-26-2011, 10:02 AM
That's great Sangye! Doesn't it feel great to have full confidence in your doctor?! It seems so rare these days.

Sangye
04-26-2011, 10:07 AM
Yeah, the PCP I was seeing outside of JHU was a very good doc but she was out of the loop. I always had to guide my care. It was great today to just tell her my symptoms and let her go at it.

pberggren1
04-26-2011, 10:45 AM
My GP is kidna like your old PCP Sangye. I have to inform her as to what is going on and what Wegs is mostly about.

Speaking of POOP. I saw a funny shirt today advertising a local plumbing shop. It had a picture of a guy on a toilet and the words: Everybody Poops. LOL

elephant
04-26-2011, 11:58 AM
Sangye , glad you are getting good care!

DEE
04-26-2011, 02:14 PM
That sounds like a good plan Sangye !

Brooke
04-26-2011, 11:20 PM
Glad you have a great new doctor Sangye. And I hope you get some answers to why you are feeling so crumby....