a doctor, a mechanic, and a duck walk into a bar..

All that has nothing to do with anything, I just couldn't think of a zippy 'subject heading'.

I went for my 6 month checkup yesterday. I'm currently at 11k .

This trip I first got to have a student of some sort ask me all the usual questions. He seemed a little disturbed that I wasn't freaking out at 11k. Do you ever get tired of repeating the same old answers? After 12 years, I do. I'm just tired I suppose.
Anyway, I had a nice visit with my hematologist. Nothing has changed really. As long as I'm 10k or above, it's fine.
I keep taking the same dose of gen-Cellcept and return in 6 months. I'll get a count every 2 weeks. Not much else to do.



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I am the opposite I only check my levels if I see symptoms. I actively seek treatment when my gums start bleeding (this usually means my counts are around 5).

I get tired of having to say no I am not removing my spleen. I find it frustrating to have to explain things multiple times.

My old hemo was great at not bugging me and letting me live my life my way. This new guy is making it extremely hard. I swear sometimes it is not ITP that is so annoying it is the process of dealing with doctors that makes ITP so horrible.

Jack- do you have any side effects with Cellcept? Are you at a low dose?

I'm having headaches on Promacta(I think thats the cause). Though I didn't have headaches when I took it before. And it always seems that I get a headache on Monday morning.. hmmm, maybe I don't want to go to work. Anyway, I'm interested in other treatments that don't break the bank. I'm paying the big bucks in copay this year for Promacta but might have to go onto something else next year.

I am the opposite I only check my levels if I see symptoms. I actively seek treatment when my gums start bleeding (this usually means my counts are around 5).

I gave up worrying about symptoms. I can’t even predict count level any longer. I used to be able to tell counts by symptom severity and the ‘squirt’ when they pull the blood draw needle out. Last week the ‘squirt’ looked like maybe over 20k, and was only 11k. I believe the body adjusts to low counts somewhat over time. But everyone is different.
But since my hematologist asked me to get count checked every couple of weeks for a little while and since he’s very cool to work with, I’ll comply. It’s only $8.16 per draw and it makes my wife feel better. Otherwise, I’d just let it ride. Knowing a number doesn’t really change anything.

I get tired of having to say no I am not removing my spleen

Well, it was a student who asked about the speen-yank, not my hematologist. So I had to run through the whole spiel with him.
I told almost-Dr.-Student that I’d be happy to get sliced, as long as he could assure me better odds than 40%-60%.

do you have any side effects with Cellcept? Are you at a low dose?

Side effects come with the territory. Some of them have lessened over the past couple of years as I grew accustomed to the stuff. It is certainly easier on me than steroids.
I don’t know what low and high doses might be. I take one gram a day (500mg twice a day).
I’d much rather be on Promacta again. It worked better for me and I lost weight on it. But I cannot pay $4,500 co-pay up-front for the stuff. $10 a month for generic Cellcept is adequate.

edit: I looked at my notes and Cellcept side effects for me were initially: nausea, insomnia, spacey feeling, anxiety, exhausted, diarrhea. Most of that didn't last long, I got used to the stuff.
Currently it is: slight cough at night, insomnia now and then, exhausted often. Oh yes, if I do not eat something within 20 minutes after taking a dose, I get suddenly ill. It is weird.
BUT, it is FAR FAR FAR better than steroids for me.



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and the million dollar question is: You are diagnosed with ITP, who do you go to.. a student doctor, a mechanic, or a duck??

Seriously, I may have been better off going to the duck than taking steroids for 5 years! but its hard to know whats right. With ITP even in hindsight its hard to know.

I've also had a very annoying experience with a judgmental student doctor and nurses who act like I have a problem for not being in crisis. Neither were seeing or listening to me.
My hemo is great though, hes so relaxed about my low counts- it shows that he has a lot of experience. I was kind of excited that my counts went up to 12K- they were 7K. He says, "well, theres really not that much difference". hah kind of burst my bubble, but hes right if 150K is low normal. But then he added, "if you have fewer symptoms at 12K then there is a difference". I like that- it shows me he is looking at symptoms.

You are diagnosed with ITP, who do you go to.. a student doctor, a mechanic, or a duck??

I'm usually my own mechanic, so I tried to go to the duck....but my wife had other ideas.
Guess who won?

Note: The student/doc (whatever they are called) was okay. He just had to get past 'the count'. Once he understood this is my normal and I didn't need (or want) him all freaky and grim, he relaxed.


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I once went to my GPs and saw a young newly qualified doctor. He asked what my count was and I told him that a few days earlier it had tested at a 1. He said "wow", stood up and shook my hand and said he had never met anyone with such a low platelet count and he was honoured. LOL. I have to admit to feeling just a bit special at that point.

I bet a duck would give you the same blank stare I get from the doctors when I say No I won't remove my spleen lol That said a little dangerous at your count they can be snappy little suckers!


I have had a few times where I thought my count was better than it was but for the most part my gums do not continuously bleed till i'm under 5. There is a hospital about 1/2 hr from here with a great emergency/ urgent care doctor. When actively bleeding he just looks and says you need treatment! I can be in and out in less than 3hrs. I wish he was my family doctor than I would not have to deal with my new specialist!