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Off to College, Count Still Low

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7 years 5 months ago #63193 by Abi2000
Off to College, Count Still Low was created by Abi2000
I'm going to be moving four hours away from where I live now to go to college in the fall. I've been going to the same pediatric care hospital since I was diagnosed with epilepsy in the fall of 2012, and they have been caring for me since I was diagnosed with ITP two weeks ago. Since I'm moving, I'll have to find a new primary care hospital. I won't have a car while at school, either, and the closest hema clinic will be two hours away from uni.

I really can't help but feel like I'm headed into a sticky situation. Any advice for handling my health while living on my own for the first time?

~Abi, 18
  • 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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7 years 5 months ago #63194 by Sandi
Replied by Sandi on topic Off to College, Count Still Low
A new adventure! Exciting and scary! How are your counts for the most part? What treatments do you respond to? What have you tried?

Are there really no hematologists near the college? First off, I'd find a good GP and explain the situation. He can at least order a CBC if you feel the need to get a count done. If your ITP isn't difficult to manage, maybe he can help you with that as well. Get copies of your medical records and keep them handy. Any new doctors will want access to those.

There are ways to do this....you just have to find a support system in your new town.
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7 years 5 months ago #63203 by Abi2000
Replied by Abi2000 on topic Off to College, Count Still Low
My counts are extremely low, they are currently at a 3. However, I have had no spontaneous or considerably dangerous bleeding, so my Hema provider says it's fine for me to continue observation instead of steroids or IVIG. Which, I suppose, is a good thing. They will continue to monitor me while I'm away.

My roommate knows of my health issues and will have no problem helping me if needed. I also have extended family and family in the area, so I won't be completely alone or without support.

Thanks for your advice!
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7 years 5 months ago #63204 by jayinchicago
Replied by jayinchicago on topic Off to College, Count Still Low
I think you got your numbers wrong. You meant 30 right not 3?

3 is critical situation levels. If you have 3 they will ask you to go to emergency room ASAP.

Even at 30 it depends whether you are stable or not.
  • 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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7 years 5 months ago #63205 by Sandi
Replied by Sandi on topic Off to College, Count Still Low
Not necessarily, Jay. 3 is very low, but my Hemo just told me to go back to work when I hit that number. I never went to the ER or got hospitalized. It all depends on symptoms for some doctors. Abi have you ever tried Prednisone? The reason I'm asking is because if you know that you respond, maybe you could get a script and keep it on hand in case you would develop symptoms. Some people here do that with doctor approval.
The following user(s) said Thank You: Abi2000
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7 years 5 months ago #63206 by Abi2000
Replied by Abi2000 on topic Off to College, Count Still Low
Jay- they actually did send me to the ER at first, I think because they are used to seeing this in older patients and that would definitely mean something awful in an elderly person. Since I'm young and it's likely acute, they're fine with observing me for now.

Sandi- I haven't tried Prednisone, but the plan is to put me on a four-day steroid plan in the event that I don't improve within a couple of months. Since they're aware that I'm leaving at the start of the school year, they're pretty serious about treatment if I don't improve on my own.
  • 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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7 years 5 months ago #63209 by Sandi
Replied by Sandi on topic Off to College, Count Still Low
Abi - You must mean Dex. Potent steroid.
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7 years 5 months ago #63212 by Abi2000
Replied by Abi2000 on topic Off to College, Count Still Low
It's possible! They just told me I'd go on "steroids" if needed, they didn't give me any specific names just yet. I don't really mind, I'll take what I can get.
  • 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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7 years 5 months ago #63217 by Sandi
Replied by Sandi on topic Off to College, Count Still Low
Dex is a four day treatment. Prednisone can be months. Those are the two steroids that are used for ITP. Both can have wicked side effects.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 5 months ago #63221 by mrsb04
Replied by mrsb04 on topic Off to College, Count Still Low
I wouldn’t call 3 critically low unless bleeding is occurring. I’ve regularly worked with a count in single figures. When I flew from UK to Oz my consultant said I could go with any count above zero.
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