Questions to ask my new doctor.

So on the 15th of this month I am going to see my New doctor a real Hematologist. I've never really dealt with one before. I know I need to ask about trying to get Rituxan again. That said I want to try and give this guy a chance I really don't have much faith in doctors.

I do not want this doctor to assume I'm non-compliant or that I will not listen.

So if anyone has any ideas of questions or things I should ask please let me know. Suggestions on what to say would be great as well!

I think if I were you I'd be more interested in telling him how I hope to work with him, rather than asking him questions. Except you want to know if he's dealt with many ITP patients; if he has, has he worked with patients for whom rituxan worked and is he going to be comfortable with the "plan" you have for your next treatment, if you need one.

Ask him which treatments he prefers to use and which ones he does not. Ask if he's tried the TPO's on his patients. This way, you'll know how how up to speed he is.

Thanks tamar thats why I posted this to get ideas. Yes we need to discuss my plan of my next treatment! Because as much as I know someday my platelets could go up and stay up. I also know what goes up must come down so having a plan in place would be a good idea.

Sandi great idea about the TPO's remind me again what they are? lol


I am so worried I'll get frustrated and loose my train of thought. So my goal is to write myself a short list of things I want to discuss in point form so I can glance at it and remind myself.

Introduction how we can work together!
Plan of action for treatment
Dealings with ITP
TPO's


I knew it was a good idea to ask here! You guys always help send me in the right direction.

Julia!

Ask him to talk real slow and draw you pictures! hahahahahahaha

I hope it goes well for you and that you have faith in him/her. You know what to ask. Just make an outline of everything you wish to ask. Take notes too! Remember that they work for you!

You might want to go back to re read a couple of post from people that are new to ITP and review their questions. It never hurts to go back to basics!

And if that does not work, threaten to come back again! That should do it!

Best Wishes My Friend!

Jeffrey

Julia - you're a pro at this! You've been at it for a long time GF! Don't be nervous. You know your stuff!

N-Plate and Promacta.

Thanks Sandi I thought that was what you were talking about just wanted to confirm. That is why i'm nervous because basically all the doctors i've ever dealt with concerning my ITP I've known more than them. I am really hoping because this doctor is actually a hematologist he knows his stuff. I do not want to review the same old conversation about the spleen and usually that takes me getting huffy before they stop bugging.

Jeffrey I've tried that idea but for some silly reason people seem to like me lol

Well woman, be prepared because many hematologists push for the spleen too. You don't have to get huffy, just stay calm and be firm. Tell him that Drew Provan does not do them anymore; he's probably heard of him. Start out asking for his suggestions, that way it will seem as though he's making the initial decisions.

So I was supposed to do a CBC before seeing him. So yesterday went drum roll! I'm at 90! They may just be dropping slow than the last time.

Which will give me a base line number so we can discuss future treatments and stuff.


Drew Provan with my luck he'll go who?

Considering where you live, if he says "who", I'd be suspicious of his knowledge. Don't assume that hematologists know more than you do. Many of us have had hematologists that don't really know a whole lot about ITP. On the other hand, some do and you might just have a really good one.

90k is a pretty good count!

I'm happy with 90. Too bad it never stays there!

Hey!

What good numbers! I am jealous! You have no idea how much that hurt to say......

Jeffrey

Well if you stopped running you wouldn't be in pain Jeffrey!

I have decided another important topic to talk to this new doctor about. A note excusing me from the flu shot!

That's a good one. Let us know if they give it to you. I've never asked for one before.

So the following was my appointment.

Introductions and hand shake
Dr: I hear you were a patient of so and so... me: yes

Dr: You have come out of remission... me: yes

Dr: your last count was done on Oct 7th... me: yes if its the count of 90.

Dr: 90 is good count nothing to be concerned with... me: I can live that number

Dr: you seem to respond well to Rhogam... me: I respond well to all treatments it is the side effects I can't stand.

Dr: I agree there side effects can be rough.

Dr: You were with Dr. Arnold for some type of trail... me: yes double blinded Rituximab had reaction to first infusion no further issues on the other 3 infusions. Knew with my reaction I got the real drug due my reading up on the drug and got a great remission.

Discussion on Rituximab

Well maybe we can contact Dr. Arnold and maybe there's another trial... me: Well I do know according to the government/ OHIP if you had a good response with a drug study than you can get it again.

Dr: would you do Rituximab again... me: yes in a heart beat loved my remission and not having to worry about platelets for almost 7 years.

Dr: (climb up on the table) I hear you refuse to have your spleen out... me: (climbing thinking I knew this was coming) yes

Dr: You know its your best chance (please lay down)... me: (laying) I heard splenectomy is a 60% success rate 40% failure and the 60% drops over long term.

Dr: had not heard that. I heard 60% success and yes 40% do relapse over time.

Dr: walking away asks: Why do you not want your spleen out?... me: 1. The one drug that works best with the least side effects for me (rhogam) is not supposed to be given without a spleen. 2. I work as a nurse and in contact with MRSA and VRE I don't usually get sick but would hate to see how sick I could get if my immune system was compromised, and what are my chances of working in a hospital if i'm immunocomprimissed.

Dr: ok those are fair enough reasons won't ask you again

Dr: With hand on door ready to open it says any questions?... me: yes! the flu shot

Dr: sorry I don't do them... me: thats ok I do not want one (asking for note) Since the flu shot can stimulate my immune system and my counts are at 90 I was wondering if you write a note stating that it could stimulate my immune system so I do not have to get one for work?

Dr: I hadn't hear that ... You know you can refuse me: yes I know was just trying to avoid the hassle. (I think he shook his head no)

Dr: (opening up door and starting to head out) I think we should see if we can get you an appointment to see Dr. Arnold he's the leading doctor on this and maybe he can get you into a trial of a new drug.
***(I heard him say this same type of thing to the last patient does he pawn all his patients)***
Is there a reason why you didn't stay with Dr. Arnold... me: I would prefer to have someone in my local region to treat me so I can get the treatment I prefer with the least side effects when I need it.

Dr: I'll see you again in 4 months

Secretary gave me new Lab req for CBC and my new appointment me: could you make it PRN that way if I think my counts are down (covered in bruises) I can go in when I want?
Secretary: looks at doctor he doesn't really respond she makes it PRN.


In and out in less than 10 minutes

Did we discuss treatment (I guess so) typical appointment (yeppers) Learn anything new (nope nada nothing) Did we accomplish anything (nope nada almost exact same conversation I had with my last doctor almost 2 months ago [except he said he doesn't do hemo patients])


Like the last doctor he's going to try and get me to see Dr. Arnold. (Yippie another doctor I hate doctors)

Hmmm. Tell me, did you get everything out of it that you expected? If not, what else would you have wanted?

Sounds like my appointments, pretty much.

I know it was really post. Sorry!

Guess I was hoping for what I got! just in a different way. I will say he didn't push splenectomy! He's willing to give me my treatment of choice! He is also going to try and get to the one doctor who can get me Rituximab covered by the government.

That's good that he didn't push the spleenectomy at least, and he acknowledged why you didn't want one.

It wasn't that long. I've seen worse. :laugh: I'm glad it went well...now you don't have to worry so much.

Winnifred wrote:
Dr: With hand on door ready to open it says any questions?...

Dr: (opening up door and starting to head out) I think we should see if...

Grrrrr! Why cannot a doctor park his/her bum down, look the patient in the eye and ask if there are any questions?! Those who ask that when they are 1/2 out the door are make one seem they are a pain for asking - yes I have questions but you are almost in the hall!

Julia,

Here is what I think you should do. When the doctor comes in politely tell him/her to sit down because you have questions that you would like to have answered. And that you realize that they are busy, but you are the one that has the issue that has sought out their assistance and guidance. And remind them that the quality of the remainder of your life may very well be in their hands.

Now that you have successfully laid that on them I think that they will sit and visit with you. Demand your time but prepare for the opportunity. Would you like me to write you a script to use?

They are doctors not the Almighty! I have had to remind mine a time or two who was in charge. With my doctor it was well received.

Demand your space girl!

Jeffrey