Not a good feeling

I went and got an CBC today and will get the test back tomorrow. I do not have a good feeling about this, but every time I have a good feeling it turns bad. So I'm hoping that the bad feeling will be good. Just praying that I am doing well.

I'm going to have my CBC tomorrow, and I'm a bit nervous about the results.

Just try to relax...I know it's easier said than done. Why do you have a bad feeling about this? Are you have signs that the count is low?

I am getting a CBC this week also. I'm hoping for over 20k this time!
My count was 19k a couple of weeks ago....up from 12k the week prior. That is wonderful
Never had a count over 90k, and that was back in 2002. Anything from 10k to 50k is good by me.
Life goes on.
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Wow wierdjack! How did you get yourself used to feeling comfortable with counts that low always? Any advice? It is just feeling ominous awaiting counts still to me and I feel very much like you Amberyard where you get feelings and they often aren't associated with the actual numbers... Good luck with the counts and results.today!

And wierdjack or others advice how to learn to ride out the numbers and let them be low without worrying greatly appreciated! Still find the sight if new bruising and Petechiae ominous and on edge and find the symptoms don't always correlate with the count as I have more bleeding and bruising now with them being up a bit then when they were down...

Yes I am bruising and more tired than normal, just don't feel right.

Alright I had a bad feeling all day yesterday about my platelets. Well they are at 116k from 26k..... I guess my feelings are all messed up and that is find by me. Dex is an awesome drug, now I know what to take for ER times. Feeling good today..... Now I am just waiting on the doctors office to call and tell me what is next. Last time I talked to them they are upping my Promacta, so I should find out soon....

Great news Amber!! Glad your feeling better!

Same thing happens to me often..my son's count was 11, week later he looked AMAXING, so I called got him a count results..11..hmm

Than I think Oh he looks horrible, he dropped, and he is the same or even up a few numbers??

Good for you Amber! Been thinking about you!

Jeffrey

Feeling good today, was really surprised by the count but I will take it. Re check next Monday to see if it was the Dex or the Promacta that raised them. Just glade I don't have to get another CBC tomorrow on my only day off. I can relax and stay around the house instead of driving 45min to get blood work done.... FEELING GOOD!!

THANKS TO EVERYONE!!

Just had to say this is why I am considered a non-compliant patient. I refuse to get blood test all the time. I was at the point of having one good vein left the doctor mentioned port and I said I'm done!

Enjoy your day off do something fun and outrageous!!

I'm at that point Winnifred, so tired of CBC's every week. Wish there was a at home test for platelets but that would cost a lot. I'm just glad to wake up with out a clock tomorrow, and chill with the dogs while my husband is at school. Watching girly movies is the plan for tomorrow... don't want to drive anywhere, it seems that is all I do anymore, drive to this doctor then that doctor.

So glad your count is up Amber. I've been spending my one day a week off going to hema also. But right now I know I have to. Hopefully the promacta will give you stable counts and you won't have to go every week. Good too that the dex worked well, much easier than IVIG.

Enjoy your day!

I have a bad attitude! I just do what I want and to h____ with it! :evil:

Jeffrey

Ladies do take care of yourselves. I worry about you all!

Jeffrey

That is great your counts were.so good! Enjoy the girly movie day! Sounds like a great plan!

Dex is an awesome drug, now I know what to take for ER times

Dex is a great rescue treatment for many of us. I have a standing Rx for it. Because of that, I have not had an 'ER time' since I let myself be talked into going at the start of all this a decade ago.
Everyone is different. But when I need a quick 'boost' in counts, I can take Dex in the comfort of my home, not miss a bunch of work, I don't rack up hospital bills when I am sleeping in my own bed, I leave that room at 'The James' for a cancer patient who needs it more than I do, and I always have my hematologist's cell number if I feel uneasy. I've never used his cell number, but it's nice to have. Actually, he usually calls me.
There are downsides to Dex. One being the boost doesn't last more than a few days for me.
Note: You might not call Dex awesome if you had to use it for a couple of months at a time.
It's 'interesting' to be be on a 40mg x 4 day pulse of Dex every week, then play/sing in a biker bar on Friday nights after working my regular engineering gig all week, while cranked on Dexamethasone.
But hey, the stuff works! I've gotten all the way up to 62k on Dex before. That's great for me.

Hang in there, relax some, 116k would have me dancing (and being a musician, I don't dance).
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MommaBee asked; "advice how to learn to ride out the numbers and let them be low without worrying greatly appreciated!"

Learn your personal ITP parameters. Everyone is different, but many of us are living with low counts just fine. I'm more interested in symptoms and the whole picture, than counts. A count is just a count...and a 'normal count' is something I have never known. The count is only one indicator of what is going on. Once you learn your own comfort and safety levels, it's easier to relax. I mean really, what else can one do? It doesn't help to fret. Worrying doesn't make you feel any better, nor does it improve your condition.
The trick is figuring out (along with your hematologist) where YOU are safe and comfy. It doesn't matter what my comfort level is....it only matters what yours is. Learn what yours is, then let life continue.
Oops, almost forgot to mention that those fewer platelets that are still zipping around inside me are super-sized, new, and uber-sticky (plus all the micro-particles). That knowledge does help one to relax some.
And one other thing that is important; If you have low counts, learn what works best for you as a quick 'rescue treatment'. Mine is Dex. I can relax a lot more with the knowledge that (if need be) Dex will always bring my count up into the 40k-50k range within a couple of days.
Hmmmmm......seems to be a common theme here: 'knowledge' of your parameters helps one to relax.

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Winnifred said; "I refuse to get blood test all the time."

Right on, right on! .... I actually decided to wait until next week. My hematologist asked me to get one, but there is no rush.
Back when I was on Promacta, I only got one twice a year. Now I go more often, but only to monitor after switching to Cellcept a couple of months ago. After this one, I'll probably wait until I see my hema in October.
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Amber, I am really glad to hear that your counts have gone up!! That is a really good count!
Try not to worry so much and enjoy yourself some.

Jack, I wanted to ask you if your symptoms calmed down after some time? That's what happened to me the last time I had a bad episode. It seemed to take a few weeks, then I started to get a lot better (though, I was watching what I ate). Dex also seemed to be a life saver for me and finally would get my platelets back up.

Also, I like the fact that your hemo gave you his cell number and will call you in an emergency. I have a good hemo but cannot get him on the telephone in an emergency. He is so busy with cancer patients.

Jack, I wanted to ask you if your symptoms calmed down after some time?

Interesting question. 10 years ago I bruised at the touch of a feather when under 20k. These days I rarely bruise much above 10k. I suppose you could say the symptoms have calmed down. Under 10k is another matter, but it's not a huge deal for me. I still go to my engineering job, work on my side business, etc. But 10 years tends to alter the way one views symptoms also.

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Also, I like the fact that your hemo gave you his cell number and will call you in an emergency.

Heck, he calls me to tell me what my counts are or just to see how I am doing. He is extremely busy (it is a teaching hospital), he specializes in ITP at The James Cancer Hospital (The Ohio State University)...yet every one of his patients seems to get treated as if they were his only patient...super staff as well. It is wonderful to have a hematologist who does not freak out, or freak me out, or freak my wife out, or insist on the same one or two treatments for everyone.
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I would love to find a hematologist like you have! That is half the battle--dealing with doctors! I really like my hemo; he is really knowledgeable (was under Dr. Lieberman from this forum), but he is just too busy and has too many patients (Fullerton, CA). I can't even get a call into him if I tried to ask him a question. I think there is a problem here in California--not enough doctors.

My goal would be to find a hemo like you have and one who understands ITP. When I was in the hospital three years ago, I had to actually argue with some of the doctors regarding my treatment. I finally was able to get switched to my current hemo and we get along really well. He was the one to agree to let me out of the hospital if my platelets reached 12. I was ready to leave when they were at 4-5. I was in there for nearly two weeks and they weren't budging. I didn't want to make the hospital my permanent residence!

I tried to get into Dr. Catalan at OSU but would have taken 4 months, so went to see a specialist at Cleveland clinic named Dr. Mccrae. He is great. He is up on every article and conference and only treats itp. It is worth the 4 hour drive. I called the office freaking out one day and he called me back within 5 minutes.....I was very shocked! Then I was very shocked when I went last week. I didn't know how long blood work and all that jazz would take, but I was very early. He ended up seeing me 45 minutes early! Unheard of for doctors these days. This disorder is a challenge, but having great doctors decreases the stews drastically!

The PROMACTA seems to be working, two weeks ago I was at 26k last week 116k and this week 113k.

I am doing the happy dance today!!!!! I may not have to up the Promacta since the medication is to keep me around 50k. They are dropping but not much at all, so he could lower my dose. We will see know just waiting on a phone call from the doctors office to see what he wants to do or he could just wait until I see him on Thursday......

great news!

Amber, I am happy for you! Try to relax and enjoy yourself.

great news!

Great! I am very happy for you Amber!

Jeffrey

That's awesome Amber! Hope all goes well from now on.

Two weeks ago 119k last week 116k and this week 19k. Doc is going to do the 4 days of Dex and upping my Promacta to 75mg. Sure home this works!

Why not just stick to the Promacta, how will you get your dose figured out if you are also taking Dex? Are you bleeding?
Erica

I can't get the 25mg due to the holiday until Friday or next week. So I guess it is ti prevent them from falling more. Don't know I am at a loss...

I agree with Erica. The Dex could really throw off your numbers. Hope it goes well and that you are feeling okay.