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Upset over cbc tomorrow--probably being ridiculous

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13 years 4 months ago - 13 years 4 months ago #25085 by jdarlin02
I go for the first cbc tomorrow since my count hit an all time low of 4.
Where I have to go the lady is a digger and the last time she did something that made a pop sound, caused a bit of sharp pain but got the blood. I am a bit anxious about it.
I have a sneaky suspicion that my counts will be low even on the 80mg of pred and the hemo is going to call and want me to go to where he is 45 min. away to wait 2 hrs. for his staff to tell me i have to go to the hospital for treatment which will take another hour to get going then however long the treatment takes at least 2 hrs. minimum.
I see him next week and we're just not getting along as I had hoped. He isnt doing much but saying a lot and not in a positive way. I dont have time to spare for coin toss wait it out treatments right now. Soonest would be August. I have no side effects on pred unless sweating and losing hair count. I have no bleeding or petechie (sp?) and I know where all of my minimum bruises have come from.
If I have to find another hemo I'll have to go 1 1/2 hrs. I dont want to burn this one incase I need him as he has affiliation with the hospital here that I like but how can I explain in a way my plans, listen to his and we come to an understanding of sorts???
My husband acts like its not an issue or even exists, my kids are too young to understand it and any physical support I have is 2 hrs. away.
Yep, today is a down day.
Thanks for letting me vent and if you have any recommendations please let me know.
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13 years 4 months ago #25092 by KittieG
Ah man - that sucks!

I hate having to go back to the hemotologist after a low count. I've had the "pop" sound and feeling as well - I ended up with a nasty bruise after that one. Every time I get a bad draw, I want to ask them to never do it again! It is crazy how different the blood draws can be - great nurses you don't even feel it.

Sounds like you are really frustrated with what I called the "rigamarole" of ITP. I think the patterns you get used to are even worse than the disorder itself. Cause the low platelets doesn't hurt or cause real duress - but the appointments and all the other junk do.

I hope you have a good appointment and if nothing else, have a better day emotionally. Good luck!
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13 years 4 months ago - 13 years 4 months ago #25099 by Don
Ive been getting regular CBCs for over two years, and I still get nervous every time I have to go. A trip to the Hematologist is even worse. Maybe Im paranoid, but, ITP can cause that. So dont feel as if youre the only one who feels that way, I believe many ITP sufferers do.

Many people (your husband included it seems) tend to dismiss ITP, as there are no visual symptoms, at least until counts get really low. So I think many people have the "well if I cant see it, its not there" mentality.
I know, Ive gone through that before, and still do, at times.

The Prednisone doesnt help with nerves either. I spent nine months on that stuff, and hated every day of it.

Im sorry youre having a down day, they suck. Period.

Hopefully, your CBC will be a good one, and you can relax a bit. Easier said than done, I know. But heres hoping ((crosses fingers for you))
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13 years 4 months ago #25109 by eklein
I used to go to a lab that scared me a lot with their reaction to my counts and the way they treated me. It was awful. Since then I found a lab I loved, the difference is huge. I know your dread.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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13 years 4 months ago #25133 by Gort
You have a right to a doctor that listens and to blood draws that don't harm you. We all get a bad draw every now and then -- it's unavoidable. But, if it happens more than rarely, you should go shopping for a new lab. My veins tend to roll, and so I am a "tough stick." There is one phlebotomist at my hematologist's lab that "gets me" -- she nails it on the first try and almost never has a problem. So, years ago I started asking for her to do my draws, no one else. Sometimes I had to wait longer, and I have to make my appts for when she is there, but now they don't even ask and just know to book me with her.

If you aren't happy, go shopping, or at least voice your concerns.

--Steve
Living with ITP since 1967.
"Abandon negative action; Create perfect virtue; Subdue your own mind. This is the teaching of the Buddha."
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13 years 4 months ago #25175 by jdarlin02
Thank you all for your understanding, confidence and well wishes.
That is why I come here because quite literally you all are the only ones I know who get it lol.
Sorry for the melt down post. It was for nothing so far. She drew four vials (for hvc, hiv and h. pylori testing as well which should have been done 4 months ago imo) this time and got it right on the first time and I too am a hard stick as my veins will roll or they have to be gotten into sideways. The blood had to be sent to Dallas which is about 5 hrs. away but I would think that if the count was really bad I would have heard back from them by now. Right?
Im sticking to what I feel is right for me so I guess I shouldnt be waiting around for a bad phone call.
On to the weekend, armed with prednisone if needed. ;)
Have a great weekend to all of you and thank you again for including me here!
  • 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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13 years 4 months ago #25211 by Sandi
I'm glad it went well. Hopefully you won't worry so much the next time!
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13 years 4 months ago #25282 by jdarlin02
Nurse called with test results.
Negative for HIV and Hep C but positive for H. Pylori and count was at 32K. Go for breath test Wednesday with next cbc.
Do I need to have my kids tested for H. Pylori? I read it is contagious.
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13 years 4 months ago #25305 by crystal lee
Nice results :)
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13 years 3 months ago #25341 by DeeDee Marie
At least you now may have a reason for your ITP. Hopefully, treating the H-plori will help your platelets to stay up.