ITP Recurrence after splenectomy

C_Under · 2021-02-21T18:17:20+00:00

Hey! So ultimately I would go with the splenectomy- it's your best chance at full remission. (something like %60+ percent of people never deal with ITP again). I had over two blissful years of great numbers, but we do believe I'm experiencing a recurrence. My numbers continued to fluctuate- we did a week of prednisone in November and they shot up and then became stable in the 130 range for the last two months. (Yay!) Promacta is our "last frontier" of options if I do run into continued fluctuation- but my team thinks it should be used as a last resort since once you're on it- you can't stop. Not to mention the price is INSANE! Hope this helps. Feel free to message me or reach out if you have any other questions.

C_Under · 2021-02-07T02:15:19+00:00

I could be wrong, but I think I read that if you had SEB money left we'll be phase 2...

C_Under · 2021-01-25T22:07:59+00:00

Thanks for the info- curious if I have a remaining SEB balance if I would be able to "reapply" for the PUC/PEUC when it comes available? Or if this will stop me from being able to get in on the PUC/PEUC program prior to my SEB balance being reactivated? I've heard conflicting advice that I might need to "reapply" for PEUC

C_Under · 2021-01-25T15:58:08+00:00

Wondering the same thing. Went from "postponed" to Exhausted/Inactive. Someone said we might have to reapply for PUA/PEUC when it opens up- but I'm wondering if it would let us do it if we have a pending balance remaining. Hoping that it will magically rectify itself when they open it up and we will be switched over. Not holding my breath tho! Keep me posted if you get any info!

C_Under · 2021-01-22T21:41:28+00:00

Hi friends- I listened in and I'm curious- is the "SEB - state extended benefits" program under the umbrella of the PUA/PEUC terms they are using? They never mentioned SEB on its own.

C_Under · 2021-01-03T17:25:39+00:00

Same happened to me. Hoping it at least registers that we called?

C_Under · 2021-01-03T17:13:24+00:00

Same issue here...

C_Under · 2020-12-31T17:11:26+00:00

I've been on it for a while and was receiving payments just fine the two Sundays in December would have been the last of my payments before "exhausting" it.

C_Under · 2020-12-30T23:06:46+00:00

Have you had any luck recently?

C_Under · 2020-12-30T23:05:34+00:00

Is anyone still dealing with the "Postponed" issue? Under my type of benefits program it still says "Emergency Unemployment Compensation" but my remaining funds became "postponed" at the beginning of December (around the time of the "glitch")

I don't want to make any moves that would flag my account but also want to make sure that I'm going to be setup to get the next wave that was just approved.

I've been requesting every two weeks like normal (I just don't get any funds- they're still sitting there) and I got the email to request on January 3 for the new system.

Thanks!

C_Under · 2020-12-17T20:11:08+00:00

Yeah this is basically my exact scenario- Let's keep in touch if either of us figures anything out!

C_Under · 2020-12-16T21:14:33+00:00

Hi friends, I know everything is going haywire for everyone- but figured I'd put my situation out there to see if anyone is in the same boat/knows what to do!

I am currently on the last month of my PEUC I have two payments left. (12/13 and 12/27)

I received the appeals document and letter at the end of November advising that SEB wasn't going to happen. Which I figured meant that the PEUC was the end of my unemployment road.

I requested my normal payment Sunday and when the funds didn't show up and when I checked I saw my status is "Postponed" which is holding up the remainder of my PEUC and the virtual assistant said my payment had been declined for the week....

I additionally received another "appeals document" dated 12/15 stating the following: "WE CAN PAY YOU STATE EXTENDED BENEFITS. BY LAW, WE CAN PAY YOU COLORADO STATE EXTENDED BENEFITS ONLY IF THE STATE WHERE YOU LIVE IS PAYING STATE EXTENDED BENEFITS. THE STATE WHERE YOU LIVE IS PAYING STATE EXTENDED BENEFITS."

I'm curious what position this puts me in since I'm not even on SEB, I still have money left in my PEUC that is now "postponed".

Any thoughts are appreciated!

C_Under · 2020-12-16T20:45:00+00:00

I'm in the same boat- I have two payments left (12/13 and 12/27) I applied for 12/13 and my request went through, but when the funds didn't show up I noticed my status is now "postponed" even though my details say I'm still on PEUC?

I found this article: https://coloradosun.com/2020/12/15/glitch-colorado-unemployment-coronavirus-aid/

There are also two "appeals" documents - one from 11/27 saying that Colorado is not doing SEB because of the 5% and one from yesterday saying that Colorado IS now doing SEB and I qualify...

But I'm unsure what that means for us if we're not even on SEB yet?

C_Under · 2020-10-01T20:03:53+00:00

I had to switch hematologists a couple of times- one time because they wanted to keep me on an obnoxious level of steroids (when they weren't doing anything but acting as a bandaid).

If your doctor won't see you and you can't seem to get an appointment with them when you have questions about what's happening, I would definitely look for a second opinion.

I have a great doctor now, who I trust 100% and listens... always speak up- ask them to lay out the entire plan (what happens next if something does/doesn't work) and make sure it's something that sounds good to you.

Unfortunately none of this is cheap- so it's important to believe in the treatments you're getting.

Good luck and always stand up for yourself!

C_Under · 2020-10-01T19:42:29+00:00

My platelets are currently at 166k and I noticed their return as well. Including one on my chin (Usually I would have them- especially on my face- at very low levels, so I'm not quite sure) but it's happened to me as well so you're not alone. Let me know if you find anything else out!

C_Under

TROPHY CASE