ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to greta799@yahoo.com. We want to hear from you.

Wednesday, November 28, 2012


Ros Bryan came up with our question for this week. She posted this in one of the ITP support groups on Facebook and got some very interesting responses...

 When you see your doc/specialist, do you listen to them and let them make the call or do you have ideas of your own, that you want followed, (so long as it is of no danger).  Opinions anyone???
  
 Here are some of the replies she received:
1. Keep that up! and be bossy. Polite but not reverent. Being your own advocate is the most important thing to be, you are the boss of you, ITP or not. And if your doctor doesn't like it, they can kiss your behind. Personally, I always come with a list of questions, observations about my symptoms, and when he recommends a medication I tell him not prescribe it until I get all of the information about it and then I'll approve it. I learned my lesson the hard way by taking prednisone without looking it up first. My innocence was gone fast!
My doctor LOVES it. his nurses hate it because it's quicker for them to just prescribe it, but they can kiss my @ss too!

2. At the start I used to listen because I was scared and knew nothing ..lol..In saying that I haven't been to my hemo in nearly a year! If my count is ever low enough for treatment, I will not be taken pred! so she can think of something else..other than that! I just listen..and agree and leave ..But I have no problem in asking..WHY is this what your giving me ..etc etc.


3.We are all guinea pigs. Most of our doctors don't have more than a few ITP patients and they are all different, respond to different meds, are symptomatic at different levels. Mostly I think it is a cooperative effort. The doctor has ideas. I have ideas. When necessary, we come up with a new plan.

4. I agree wholeheartedly that's it's a cooperative effort and input should come from both sides. You're both working together for a common solution that will enhance your quality of life. You're paying for medical knowledge and advice, and in order for that advice to be effective in your specific situation, the doctor needs to have your input

5. I am feeling like I need to be more bossy now. I just listen to the dr and do whatever she says. But now she is sending me to the neuro because of the fatigue. And I have already been there for it last time and they did an emg and there is nothing wrong. We thought it was just from the pred but now I have been off it since January. My count from Thursday is 53K. At this point she is just waiting for it to bottom out before I even go back to see her.

What do you think...Do you let the doctor make all the decisions or do you voice your ideas and suggestions? If so does you doctor listen?

Please leave a comment below and let us know what you think...

15 comments:

  1. Stephanie Oquinn could not get google to cooperate but here is her reply. Thanks Stephanie!!

    I will voice my opinions, But he calls the shots.

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  2. I voice my opinion and discuss the options with them. Being proactive is a very important in my eyes. In the end it is up to me what happens.

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  3. Ros Bryan is also having problems with google so here is her response:

    I am guided by my doctor /hemo, but ultimately I find myself telling him what path I wish too take. Sometimes I feel that's wrong, but I guess that is what I'm used to doing!!!

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  4. I think ultimately I call the shots. My hematologist is primarily an oncologist, and I like that he's young and still very interested in research and new things coming out. I'm about the same age as he is and I happen to have a PhD in biochemistry and work in the pharmaceutical industry, so I question absolutely everything and research everything myself. I like that he treats me as an equal in that regard and we can discuss options openly and it doesn't feel like I'm getting ordered around. The first hematologist I met with when I was in the hospital didn't seem to like it that I talked back. He told me that if the prednisone didn't work, my spleen was coming out. I wonder if he even knows there are other treatment options out there now???

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    1. My hematologist is the same way. He appreciates questions and comments and I think we surprised him with some of the information we shared with him.

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  5. My 9 year old daughter has ITP. Diagnosed in July 2010. She has been on prednisone since May 2011...when her counts go up dr lowers dosage but inevitably they drop again. We are in "wait & see" mode. He only sees her once every 6 months or so. I am debating finding new hematologist but don't really want to put her through all the tests for again, she is only comfortable with a few of the nurses drawing blood-freaks out if its someone she does not know. I am at a total lose.

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    1. Melanie, ITP is a mysterious disease that no one understands. Maybe you could talk with your hematologist about some of the other treatments available so your daughter won't have to go through the roller coaster ride with her platelet count and the side effects of Prednisone. You can also ask him about seeing her more often if you think it is necessary. That may make you more comfortable with him/her since you don't want to change hematologists.

      Hope you don't mind, but blogger repeated your comment several times so I deleted the repeats.

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    2. I do advocate for myself-as far as far as most doctor things go. But I never have needed to do that with the hematologist-but for sure, yes at the orthopedic and rheumatology offices, where I've asked to be sent to PT or to try or discontinue various medications or even really push my orthopedist to clean out my knee that had scar tissue in it. I did get him to do it eventually, but unfortunately it has come back, but that is a different story!

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  9. My old doctor couldn't see past my tattoos, he was judging a book by its cover..Not cool, so as of now I see my family doctor (which is like family) he does my CBC's every other month. 105 then dropped to 99 that was my last count. I can tell its dropping even though the old doctor said that it couldn't be true (what I know my body). Nose bleeds and bruises easy now (again).

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    1. Every time I go to the vampires, I try to guess what my platelet count is going to be. Several times, I have hit right on the button or within a couple thousand. We do know our own bodies!

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  10. Both. It's a team effort. I will sometimes argue and ask questions. However, at the end of the day, as long as his suggestions seem reasonable, I will do it. The day that I feel he's being consistently unreasonable is the day I need to find another hema.

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  11. Sometimes I think I overwhelm my hematologist with how much I have read up on things. I always ask her about options and alternatives

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