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tomorrow

  • server
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14 years 11 months ago #9498 by server
tomorrow was created by server
I go for a CBC tomorrow. Last month I was at 33, no symptoms. In the past 10 days or so I've gotten some petechiae and bruising. I think because of that that my count is lower. I dunno. I'm afraid they are gonna be low and the doc is gonna want to do a platelet transfusion. I really don't want to do that, had enough of that, but my husband thinks I should do it. I have never been a bleeder, except for the monthly thing that started this wonderful trip! Can that change? Can I all of a sudden get bleeding as a symptom? I think I know the answer, but I need opinions/advice. UGH!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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14 years 11 months ago #9500 by SteveC
Replied by SteveC on topic Re:tomorrow
Can't answer your question but can say I was @ zero for several weeks with no bleeding symptoms so active bleeding isn't an absolute behavior. I know it difficult but don't anticipate - ITP expresses itself differently in each of us.
Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C
  • 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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14 years 11 months ago #9501 by Sandi
Replied by Sandi on topic Re:tomorrow
Gretchen - yes, symptoms can change. I'd really question the transfusion though.
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14 years 11 months ago #9508 by Gort
Replied by Gort on topic Re:tomorrow
Transfusions do not raise counts, they lower them. Transfusions, instead, can help stop bleeding (at least temporarily).
--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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14 years 11 months ago #9521 by server
Replied by server on topic Re:tomorrow
Well.....I don't get it. If I ever thought before that I was confused, I was wrong! In October my count was 33 with no symptoms. This month my count is 57 with bruising and petechiae! I'm so discouraged. I don't wanna have this anymore. I'm tired. I'm tired of seeing the bruises. I'm tired. I'm tired of putting up a bold/brave front for everyone when I just want to scream and cry. I'm tired.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
  • 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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14 years 11 months ago #9525 by Sandi
Replied by Sandi on topic Re:tomorrow
Gretchen, girl get a grip! You're doing just fine. ITP isn't easy but you can still get out of bed and see the sun and laugh at movies and kiss your husband and hug your kids and trip over toys and do your laundry and talk to me on the computer and eat crackers and wear funny sun glasses and wash your hair...should I go on?

We all have our moments. I used to be right there with you. It's frustrating, I know, but bruises fade and counts change. This doesn't mean forever. You're doing okay.
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14 years 11 months ago #9527 by sarahw
Replied by sarahw on topic Re:tomorrow
Hi Gretchen,

Sorry you are feeling down -- but at least your counts are up!

I also get tired of trying to be "glass half full" about this condition, with no end in sight. I used to spend a lot more time thinking "well, it could be worse" but now sometimes I do think "okay, so it could be a lot better too"!

At least we are out of shorts and bathing suits weather (depending on where you live), so our lovely bruises are not on display!

Hope you get some time this weekend to do something fun and take your mind off your platelets.

Sarah
  • 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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14 years 11 months ago #9528 by Sandi
Replied by Sandi on topic Re:tomorrow
I hope you know I was teasing. I don't know what else to say to get you out of your funk - there isn't anything to say, you know that.
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14 years 11 months ago #9535 by meredithjane
Replied by meredithjane on topic Re:tomorrow
Hi Gretchen,
Glad to see your better than expected results - a nice surprise.
Hope your emotional roller coaster settles down & you can focus on all things good.
Sometimes I think the Man upstairs has a sense of humor & I'm His latest joke. I just don't get it!
Hang in there,
mj
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14 years 10 months ago #9553 by lornahalbert
Replied by lornahalbert on topic Re:tomorrow
server wrote:

I'm tired of seeing the bruises. I'm tired. I'm tired of putting up a bold/brave front for everyone when I just want to scream and cry. I'm tired.


You summed that up perfectly for me. I bump into something or someone knocks into me with something and I sigh and think "One more bruise...". I'm a bruiser myself, I get tons of them even though my counts have ranged from 25k-50k lately. Even my medical alert bracelet gives me bruises!

And I know what you mean about putting on a brave front. It's hard to smile and tell people it's absolutely nothing when you stress out about it secretly.

I've stopped getting regular counts. I don't plan on getting another count until I'm actually worried. Because the week before the count I'm stressing about the number. The week after the count I'm stressing out about the number. There's no point!

Anyway, hang in there. I hope you get to feeling better soon.
  • server
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14 years 10 months ago #9554 by server
Replied by server on topic Re:tomorrow
Thank you all for your replies. Though I'm still in that funk as Sandi put it, your comments do help.
Steve, how do platelet transfusions make your platelets drop? It makes no sense to me!
Sandi, :) it's all good.
I know I asked once before about the CBC saying Large/Giant platelet present, but this time it says
"Manual platelet count, due to large/giant platelets noted on periheral slide. Instrument count is inaccurate due to giant platelets"
I know manual counts are more accurate. I know large/giant platelets are good because that means my body is making them. But....can't it also be a bad thing because then there aren't any small ones, meaning they are being destroyed before they can mature? Is that right?
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
  • 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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14 years 10 months ago #9555 by Sandi
Replied by Sandi on topic Re:tomorrow
www.transfusionmedicine.ca/resources/books/vein-vein/complications-blood-transfusion/types-transfusion-complications/post-trans

One reason counts might drop after transfusion.

When do you go for the next count?

Guys, try not to pay attention to the bruises. I have bruises all over my legs and have normal counts. I'm taking aspirin and Vitamin E that cause them. I was in the hospital last week and have a horrible bruise on my arm where they took blood and inserted an IV. They are ugly, but as long as your counts are safe, you'll be okay.
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14 years 10 months ago #9556 by tamar
Replied by tamar on topic Re:tomorrow
Gretchen,

Large platelets will mess up a platelet count because they don't get counted. The machine just doesn't recognize them as platelets. It doesn't mean you don't have any smaller, older platelets.
  • 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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14 years 10 months ago #9563 by Sandi
Replied by Sandi on topic Re:tomorrow
Gretchen - how are you doing today?
  • server
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14 years 10 months ago #9573 by server
Replied by server on topic Re:tomorrow
Thanks for the link Sandi, I think I understand what it's saying!
I don't go for another CBC until 12/10. I'm trying my hardest to not stress about it. Funny thing happened on Saturday. I hit my hand on something and it hurt bad. A little bit later, I had a bruise on top of an existing bruise! I'm making it a point to take your advice about not paying attention to the bruises. It's a job, but I'm trying. I'm feeling fine physically, kinda tired but not as bad as in the past. I'm still on that emotional roller coaster though. I don't like it, not one little bit. I'm thinking about just letting it all go. Just go back to life as it was before ITP. What do I need to go to the doc for all the time? I'm not a bleeder, so until/if I do, why bother? I dunno.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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14 years 10 months ago #9576 by SteveC
Replied by SteveC on topic Re:tomorrow
Letting go is hard - took me about 3.5 months but I'm a slow learner :)) And then I pick it up again - GOD must laugh at my feeble attempts to rely upon him (as if I can control ITP - NOT!) but I keep trying and that's important.

Keep the faith and post often.

Blessings
Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C
  • 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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14 years 10 months ago #9584 by Sandi
Replied by Sandi on topic Re:tomorrow
It took me a year. After that year, I did let go. You do come to terms with it and stop stressing (most do). After that year, any time I dropped, I just dealt with it and didn't worry about it. I didn't like it by any means, but it just became something else that I had to fit into my life.

Back burner. It's okay to put it there for a while. I see my life that way most of the time, with 4 burners. There is always something cooking on all of them, but things that were on the front get moved to the back quite often and replaced by other things.
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14 years 10 months ago #9587 by meredithjane
Replied by meredithjane on topic Re:tomorrow
I agree with Sandi about the burners.
Life can get very chaotic at times. Throw in work, family - young & old, community, house building/moving, friends needing support, let alone any other interests one might have, & ITP takes a back seat.
People ask '& how are YOU going?' & I have to stop & think - 'Oh yeah - that'.
Unfortunately the regular tests are not as simple as a pin prick for sugar. Having to visit the Dr. for 5 minutes to have blood drawn & sign the request form is a nuisance, let alone having to pay for a 'consultation'.
As for bruising - it's not always possible but I find using a soft gel icepack helps.
mj
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