Shameless Troll #33

[jeffn]

I think it's #33 anyway.

So what qualities do you look for in Rheumy? Qualities that come to mind might include but are not limited to; personality, bedside manner, trust, lots of tests, nice looking nurse, organization, insight, thoroughness, or just that they give you a warm and fuzzy feeling. What trait or combination of traits are most important to you? ie what kept with your Rheumy?

There was a thread on another forum that got me thinking about this and I thought I would run it by you guys.

[steve201]

NICE one Jeff...

for me it was a complete team effort...my primary care was an idiot..didn't know what I had but after a huge argument in his office...he finally recommended me to my Rhummy that I've had for 12 yrs....
what I look for is in this case knowledge of the disease, his experience with the disease and willing to work as a team leader....
in my experience I've found that this is not just one pill, go home and call me in the morning....I've had everything done that can be imagined....ct scans on the lungs....echo cardiogram of the heart.....physical therapy to keep my strength going....trying different treatments to see how my body reacts and if it will counter react to some other drug.....get all the notes from all the other people and make sure we're going in the right direction....and willingness to listen too me or my wife to try different treatments or not....is it logical....will it be beneficial too me or detramental instead....concider research already done if it's a valid option or not.....
Dr. Slack basically saved my life when I first got the disease.....he was willing to listen to us and try anything....if he felt it might work...he'd prescribe it and then if it didn't ..we'd go another way......

this disease is very individual as well as being a team sport.......

in my experience....you have to take some control and he has to be a good team leader....

Steve

[Cubby]

For me, it is a doctor I can "talk to" who actually listens. My dr. is Glenn Ehresmann at USC in Los Angeles. He is the reincarnation of Marcus Welby, MD and I just love him!

[grammie]

Originally, I looked for one that was researching SD and had some positive ideas. I went to where the research was being done.

Now I'm looking again back at MGH where all my medical stuff is. I can keep the same one but really want one that will look at the whole picture and communicate with my other doctor teams. The first one did but this one so far hasn't seemed to.

So what am I looking for besides being able to communicate with me and the team but also will let me continue with AP. I KNOW it has made a difference for me and I don't want to try something new just because....

Those are the points I'm looking for. We'll see if I stay where I'm at or change.....hummmmm

grammie

[Cubby]

It makes me sick that so many went to Dr. T and got the AP and for some weird reason, it sounds like he did not communicate it to the new doctors?? don't they have his charts with all the info of how well everyone has done?

[christel]

I like knowing that I am being treated where the latest and greatest is being done/researched. It helps that the staff is nice. It is very important that they listen to me and respect my concerns. Being a nurse doesn't make me an expert by any means, but I sure do appreciate them explaining stuff to me and listening. (Did I mention that listening was important?!)

It is also very important that you can contact someone from the office within a reasonable period of time when you have a question or problem.

I am sure there are other things that are important, but right now these are the things that are at the top of my list..

Christel

btw--'cute' nurses don't rate on my list at all, Jeff!!

[jeffn]

I'm fortunate that I don't have much wrong with me other than the SD, at this point anyway. I hope my good run continues. Now and again I need to see some sort of specialist but not often and looking back most of those visits were SD related. I used to have my rheumy in Boston and my PCP locally, my rheumy has since retired. There were at least three of us here that went to the same rheumy and now we are a little in flux, right grammie. Dr.T was my third rheumy the first was unacceptable and only went there for three visits. The second was very good and was at MGH in Boston, he did a very good work up but wanted to wait five months before starting any treatment and was not interested in AP. I moved over to BI and Dr.T to use the time to try AP, had that not worked I would probably have returned to the doc at MGH. At this point I am in the hands of my PCP. He is very forthcoming and I feel has offered good care and a good ear. I tend to ask lots of questions and listen well too, I think, and as Christel says the listening is important. I like a good give and take with my doctors.

What prompted me to pose this troll was a thread on another site. Someone asked about AP and it immediately became a bash AP thread as it always seems to over there. Anyway a woman posted and complained about her treatment at the same doc I went to at BI. Now I understand that no one gets along with everybody I know people locally that have gone to my rheumy #1 and are very happy there, I don't try to talk them out of it. They are happy with their care and that's what matters. The thing that got me very curious was that the woman on the thread that was critical said she had gone to this particular doc for nine years. I posted back something to the effect of "why on earth would continue to see a doctor that you were dissatisfied with for nine years". She replied that she was an RN and she continued there because of the reputation of the hospital and the doctor. I just don't get it - I don't care who the doctor or hospital is if you are not seeing results move on. I do understand about being attracted to the reputation and research etc as Christel says but at some point I need to see some results. To continue on for nine years when you feel you are not receiving enough tests and substandard care is your own fault. Just my opinion. When I went up there it took me only a couple of visits to get a feel for what the gentlemans bedside manner was. On my next appointment with my PCP I explained that I was on AP BUT if he thought I needed any tests or whatever he should order it and not to assume anyone else was taking care of it. He sees me more than any other doc and has a good understanding of SD so he should have a good idea of where I have been, where I am and where I should be. It worked well with the two docs and now I am going to coast a bit with no rheumy and see where this "interesting ride" of SD takes me. I can search for another if the need arises. The old rheumy was the only AP practitioner at BI and the new ones they brought in after his retirement appear to be trying to get people off AP. For now I'll stick with the program.

I am of the opinion that I need a doc that manages and coordinates my care and when I see different specialties they all report back to that manager. It seems many don't have this and the right hand does not know what the left is doing. Finding the right doc is easier said than done probably.

[grammie]

Interesting I just reread my comments and I can say that the one I saw at MGH was good as far as my hubby and I could tell. He went with me to BI (as well as MGH) and was very impressed with the doctor that took over some of Dr T's patients. We're going to give MGH a try.

grammie