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New..just wanted to share my story and say "hi!" 11 years 9 months ago #3331

  • JazzenJanzen
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Hello all in ITP land! I'm Kate.. I was diagnosed with ITP a month ago.. here's the story if you want to hear:

4 years ago, just for kicks, I went to the clinic to get my blood tested. (Oh yes.. utilizing being a college student to the fullest and getting free stuff!) All seemed well... very well, in fact... except my platelet count was oddly low.. 66. But I felt fine, and the doctor didn't even say anything about it.

Then last semester I started not sleeping every Wednesday night... yes.. on purpose.. and my body was screaming at me every time I did it. I'm a double music major and was working on one of my senior recitals (Jazz Composition and Arranging)... and there was just not enough time in the week to work, go to school, do homework, AND compose.
Needless to say, I was really feeling it by the end of the semester and started having some dizzy spells. Nothing really serious, but enough to send me to the clinic again.
Again... everything was squeaky clean, save for my platelet count.. which was still in the 60's. THIS time, though, the doctor noticed... but since I'm an extremely poor college student with no insurance, there was really nothing to be done.

The semester ended very well... I gave an extremely successful recital (My Professor said it was at a Masters level (I'm working on my Bachelors).. So that was cool to hear.
I then spent the winter break trying to get my sleep back in order and started eating better and exercising more.

Then this semester started. And away again I go with the bad sleeping.... though not as bad as last semester. But on the plus side, I was eating incredibly well and riding my bike to work and school.
Aahhhh but then there was bruising... Nasty looking ones that were unprovoked. It started a week or so after the semester started... so around the beginning of February. I thought it was odd, but I've always been one to easily bruise, so I didn't think much of it. But then more bruises started showing up before the old ones could go away.... Buuuut I still didn't go to the clinic because I was feeling fantastic! Getting into shape and eating more veggies than I ever had!

And then I went sailing. B) It was an AMAZING day and looooooads of fun! But I did bump my arm at one point whilst tacking. I remember thinking, "Meh.. that's most likely going to leave a mark."
By this point I was in the habit of checking myself in the mirror in the morning for any new marks, and oh you could imagine my surprise the next day when I see a MASSIVE bruise the color of the night sky and as large as my open hand on my arm. And another one on my calf...
THAT got me worried, and I finally got my butt to the clinic.

The next day I get a call from the school doc, telling me my platelet count was 14. Whoops! :huh:

The next thing I know, I'm in the hospital.. being told I have ITP, and get put on Prednisone (60mg).... I'm told of a few side effects, but it doesn't seem THAT bad, so I wasn't too upset about it. I completely changed my eating to avoid weight gain (which, so far, has worked)... little did I know how badly Prednisone was about to screw me over... (I won't rant about it... cause I would go on forever if I did... yes.. we all know what I speak of....)

I get discharged the next day and kind of thrown out on my butt... with no insurance or primary doctor to call my own, I get stuck with seeing the school doctor and getting labs done there... Needless to say I've been doing a TON of research.. utilizing my student status and getting access to articles I'd normally have to pay for.. hehehe..

After the first week my count went to 88... next week 78.. next week 95.. So then we moved to 50mg of Pred and the next week it was 42. Laaaaame. And of course, the school doc doesn't know much about ITP, so she says to go back to 60mg. After hanging up the phone with her, I wanted to scream and cry. The Pred has made me move my graduation date to next semester, along with my other senior recital. I work as a pianist and the lack of sleep and focus is just wrecking my playing... So after much thought, I decided NOT to go back to 60mg.. but to keep it at 50mg and see what happens. Screw Prednisone! What about quality of life?!?!

I'll get a CBC next Tuesday.. so we'll see what happens.... I didn't tell the doc that I'm staying on 50mg... I wonder how she'll react.... hmmm....

I FINALLY got some aid through the county.. so I'll be able to get established with a doctor through that, and then hopefully get referred to a hematologist.

And that's that.



What a crazy ride!!! It's a massive roller coaster! But this website rocks my socks! SOOOOOOOOOOOO helpful in sssooooooo many ways!

:cheer: Go platelets, go! :cheer:

Kate

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Re: New..just wanted to share my story and say "hi!" 11 years 9 months ago #3335

  • 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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Hi Kate. It's too bad that you don't have a hematologist; you'd probably have a better experience. Not that your current doctor is doing the wrong thing...

Not having insurance, you're kind of limited in treatment choices because Prednisone is cheap and the other treatments are pretty expensive. Hang in there!

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Re:New..just wanted to share my story and say "hi!" 11 years 9 months ago #3337

  • tamar
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Hey Kate, sorry you had to join us, but welcome.

Is there any way you can get insurance? Pred is sooooo rough, I'd recommend trying to get off it or to low doses even if your platelets get worse for a while. If your only symptoms so far are bruising, then you have the option of living for a while with lower counts, without it being too much of a risk.

Keep reading and educating yourself...knowledge is half the battle (the other half being a great hematologist, which you'll have to work on!).

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Re:New..just wanted to share my story and say "hi!" 11 years 9 months ago #3338

  • tamar
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Hey Kate, sorry you had to join us, but welcome.

Is there any way you can get insurance? Pred is sooooo rough, I'd recommend trying to get off it or to low doses even if your platelets get worse for a while. If your only symptoms so far are bruising, then you have the option of living for a while with lower counts, without it being too much of a risk.

Keep reading and educating yourself...knowledge is half the battle (the other half being a great hematologist, which you'll have to work on!).

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Re:New..just wanted to share my story and say "hi!" 11 years 9 months ago #3340

  • JazzenJanzen
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Oh yeah... Prednisone is the pits! I'm trying to get off of it ASAP!

I have insurance through the county... so it's not real insurance.. but it is something. I'm going to the county clinic on Monday for a walk in... and hopefully they can get me in touch with a hematologist... I'm all about educating oneself.. and I've been VERY tempted to get some text books on hematology... the only problem is they are crazy expensive!.... but I'm still thinking about it....

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Re:New..just wanted to share my story and say "hi!" 11 years 9 months ago #3343

  • Angel85
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Hi Kate,

I agree about getting off the pred as soon as u can. I was on it for long periods of times. When i was about 12 or so, i was on it for i think over a year, and then recently i was on it for 3 and half or so mths and i hated it too.

Knowledge is power and it is good to educate yourself on any illness that you have. I am always researching new stuff on ITP to see if there are new drugs available or any changes. If you can't afford the books, maybe go to your local library, they may have books on hematology that you could read or i find the web is a wonderful place to get info on the subject.

You seem to have a pretty good aditude towards this, although it is scary when your first diagnosed, you can still do all the things you would normally do. Just make sure your a bit more careful and not do things that could endanger you when you think or know they are really low. My count last week was 12 and although i stressed abit, i didn't let it stop me from going to work and from doing all the normal things i do. The week before they were 14 and i went camping over the easter break.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:New..just wanted to share my story and say "hi!" 11 years 9 months ago #3346

  • CindyL
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I started the pred in /04, and I'm still on it. I have been pretty much since being diagnosed. However, that has been at different doses; right now I'm at 5mgs every day. I was down to 2.5/second day, but as the counts kept dropping, doc put me up to 5 every other day. At my last appt', he wanted to up my dosage, but I said I'd rather do 5mgs every day, so that's where I sit.

Good luck getting off it!

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Re:New..just wanted to share my story and say "hi!" 11 years 9 months ago #3369

  • 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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Katie:

You really don't need hematology books. You can learn all you need to here. This is a good site:

www.bloodjournal.org

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Re:New..just wanted to share my story and say "hi!" 11 years 9 months ago #3371

  • tortie
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Hi Kate, sorry you have to go through this without insurance. I wish there were better options for you. I hope you get a good connection through the County Clinic. I had to go through the pred for 2) 10 month sessions within 2 1/2 yrs, not fun, it was awful. Maybe your counts will maintain at a safe level. Be careful about lowering your dosage too fast. Keep your dreams alive, you will get through this.

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Re:New..just wanted to share my story and say "hi!" 11 years 9 months ago #3381

  • JazzenJanzen
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Wow! Thank you all for the encouragement and advice! It is reeeeeaaaaalllllllyyy helping me forge ahead!
I am SO glad I found this website! It is rockin' my socks, hard core. B)

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