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What to ask - Seeing a new haematologist

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7 years 1 week ago #64858 by Desiré
What to ask - Seeing a new haematologist was created by Desiré
Hi. I'm from South Africa. I've had ITP since I was 5. I am 31 now. Counts always low. Have tried many treatment options over the years.
Finally decided to see a haematologist again. My appointment is today.
I don't know what I should ask... I want to ensure that when I see this person it is someone I can see lifelong. The previous 2 haematologist wasn't the best.
Any advice?
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 1 week ago - 7 years 1 week ago #64859 by mrsb04
Replied by mrsb04 on topic What to ask - Seeing a new haematologist
The first thing I would want to know is I am going to be a partner in my treatment or are you expecting me to follow your orders.
I'd also ask about how up to date are you with current therapies? Ask for examples of recently read literature.
As a nurse and a patient in my opinion any doctor who balks at patient questioning them is best avoided.
The following user(s) said Thank You: Desiré
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 1 week ago #64865 by Sandi
Replied by Sandi on topic What to ask - Seeing a new haematologist
How did it go?
The following user(s) said Thank You: Desiré
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7 years 1 week ago #64884 by Desiré
Replied by Desiré on topic What to ask - Seeing a new haematologist
It went well.

I like the haematologist. I think she is more clued up about ITP than the other doctors I have previously seen.
She suggested that we first do a bone marrow aspiration and then see from there.
She said that the aspiration will help determine whether some drugs will help or not, instead of just treating and nothing working.
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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7 years 1 week ago #64885 by dru
Replied by dru on topic What to ask - Seeing a new haematologist
Glad you liked her. Finding a doctor that you feel like you can work with seems really important for managing ITP.
The following user(s) said Thank You: Desiré
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 1 week ago #64894 by Sandi
Replied by Sandi on topic What to ask - Seeing a new haematologist
If that is possible, she'd be the first doctor I've ever heard of who can treat based on BMB results.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 1 week ago - 7 years 1 week ago #64907 by mrsb04
Replied by mrsb04 on topic What to ask - Seeing a new haematologist
I agree Sandi. I wonder if she is looking for a baseline as thinking of starting a TPO or ruling that out due to presence of reticulin fibres.
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7 years 1 week ago #64908 by Desiré
Replied by Desiré on topic What to ask - Seeing a new haematologist
I think she mentioned that this will just help determine about certain drugs. She won't definitely know exactly what to use but it might help to see.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 1 week ago #64911 by Sandi
Replied by Sandi on topic What to ask - Seeing a new haematologist
Some doctors think that a BMB will determine if the problem is production. It doesn't. The majority of BMB's in ITP patients are normal and they then assume that the problem is destruction and treat based on that. I hope that isn't the case here. She is either way behind the times or way ahead.

MrsB - that would be a logical explanation but kind of invasive since most start TPO's without a BMB. You don't expect a person to start off with reticulin and CBC's can usually tell if there is a problem.

Time will tell! Good luck, Desire'!
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