When to say when?

Thankfully, I've not had the need to post anything here for a long time, because things have been going well. But I'm in a situation now that I think your expertise can help me resolve.

In August of '09, I got a viral illness that plummeted my count to 4. I reluctantly accepted a 20-mg dose of Prednisone, which promptly raised the count above 120. As the dose was lowered very gradually to nothing over the next 8 months, my count evened out, running between 70 and 90 since quitting the Pred in late April.

Dr. Hemo has been having me come in every month for a count and consultation. Once, when I questioned the need for such frequency, he compromised and said to come for just a count in 4 weeks and a consult/count in 8. I'm at the point now that I need this to end. (Am feeling a little bit like his cash cow.) All's relatively well, so I feel it's a waste of time and a co-pay for him to tell me I'm ok.

I'm well aware I might really need him some day, so I don't want to tick him off by saying I'm not coming back next month. Is it reasonable for me decide to return only to be checked if the need arises... say... after another viral illness or if I need elective surgery? If so, how should I phrase that to him most tactfully so I don't burn the bridge?

Thanks for reading,
Janet

Hi Janet,
Great that you're doing so well, & have such good numbers.
Until recently I had a count of <30> for over 5 years, and had a blood test by my local general practitioner every 3 months during that time. It seemed sensible but not overly concerned.
For some reason my count dropped, I had a nose bleed & ended up having treatment. After 2 months of weekly tests I am now back to monthly, & hoping that will become 3 monthly again soon.
I think regular check ups for reassurance & awareness are necessary.
All the best from Down Under,
mj

I agree with Meredithjane. Regular check ups aren't a bad thing. I don't mind going monthly for blood tests. I don't see my hema dr. every time. I see him about 2x's a year. Of course, if I feel the need to be tested before my scheduled appointment, I can be.

Janet:

I think I would find that excessive also. Having a few other doctors for other reasons, I try to limit appointments as much as possible because of work. I have ever only seen my hemo twice a year, no matter what was going on. We would monitor counts as needed and phone consults would suffice if treatment was necessary. I guess I got used to that and didn't feel a need to question it.

I'm now down to yearly appointments and during the last one, I had to wait an hour and a half to see him. I have time issues and I can't tell you how annoyed I was when the visit was pretty unnecessary anyway. He came in, looked at the count (which I knew already from the print out), told me I was doing good and that was it.

Maybe on the next visit, you can bring up a compromise again. Keep trying.

Hi Janet
I think it would be totally acceptable for you to speak your mind to your doctor. I wouldn't go in with attitude pushing everyone out of the way though! You may find that he has a valid reason for seeing you so frequently. I dunno. Let us know how it goes.

In talking with the doctor, I would also make it clear that you intend to pay close attention to yourself, and ask him/her what to watch for. This may make the doctor more comfortable with fewer visits. Patients who are actively involved make a lot of doctors wiling to be more cooperative.

I currently have an appointment every 6 weeks with my hemo and i quite like it cause although he doesn't always tell me anything more then the last time, I find it good to be able to touch base with him and know that he is still researching different treatment options and hasn't forgotten about me

Does your doctor have a "case manager" whom you can telephone if you feel you need consultation?

Could you communicate with him via email?

Kaiser has both those options for us, so I have many fewer co-pays. It saves Kaiser money too. When I get my blood drawn, I get the results via email and call my case manager to see what the doctor advises. (I've done this so long I can usually predict what he'll advise.)

It's a good idea to keep some connection, I think, with the hema. (I take mine and my case manager bottles of homemade jam once a year! That way, even when my platelets are pretty safe and I'm not checking in often, they don't forget me!)

Thank you all for the good advice I carefully considered each point of view, because they clearly all have merit.

I just got back from a consult. Count was 90. When doc suggested a retest in 3 months, I didn't quibble and was glad to postpone any discussion about it for the time being.

All the best to each of you,
Janet

woo-hoo Janet! You go girl!