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Steve a/k/a Gort (moved from old Forum)

  • 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 5 months ago #119 by Sandi
I have bad news. I did e-mail Steve on Wednesday night. Last night, I received a reply from his brother. Steve had a brain bleed in December and is in the hospital. His family is optimistic that Steve will recover (as he did the last two times), but right now, Steve is unable to communicate. I will keep you all updated as the information comes to me.

As some of you know, Steve has had chronic, refractory ITP for a very long time. His case is atypical. He was also taking blood thinners for another condition which left him more susceptible to bleeding. The best and only thing we can do right now is pray. Steve is truly one of the good guys on this earth and he brings much spunk and support to the Forum.

My heart sank when I read the news, and I know this will hit some of you hard too.

STEVE - WE ARE ALL PULLING FOR YOU, BUDDY!


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14 years 5 months ago #129 by lucidawn
Replied by lucidawn on topic Re:Steve a/k/a Gort (moved from old Forum)
Very sad and scary news. Prayers. :(

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 5 months ago #138 by CindyL
Replied by CindyL on topic Re:Steve a/k/a Gort (moved from old Forum)
Sandi, are you able to move all the replies that are on the old forum to here, or should we re-post on this new site? Just curious.

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  • 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 5 months ago #148 by Sandi
Replied by Sandi on topic Re:Steve a/k/a Gort (moved from old Forum)
I don't think I can move them. If I did, your replies would just be a copy and paste and it would look like I posted it.

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  • 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 5 months ago #149 by Sandi
Replied by Sandi on topic Re:Steve a/k/a Gort (moved from old Forum)
Update! I received an e-mail from Steve's brother this morning. He forwarded an e-mail that Steve's wife sent to family and friends. Here it is:


Hello everyone. After a long wait, I have some good news to share. Steve woke up this morning. I was sitting in the chair next to his bed reading, and I looked over and he was staring at me. It was a shock, obviously -- no bells, no alarms, just open eyes for the first time in a long time. That's the good news (and it's great good news). The not so good news is that he can't speak. He responds to commands by blinking his eyes, so we know, as the doctor said "that he's in there." But he can't (or at least he hasn't) speak, and he can't move his hands, arms or legs when we ask him to do that. We don't know what damage has happened -- they will now start to do a lot of tests to try to determine that. They will do an MRI very soon to see how the brain surgery has healed and to see if there is any blood remaining. His platelet count continues to be poor, and we are talking to his ITP specialists about other options. Please pray that he won't have more bleeding in his brain. I am so frustrated with his ITP. I know what Steve would say -- "hey, ITP is easy, try cancer if you want to feel sorry for yourself." For now, I guess, he's awake, it appears that he survived the surgery, he's breathing on his own, and for all of that I am very happy. Now we hope and pray that he hasn't lost his memories.

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14 years 5 months ago #150 by
Thank you for posting this Sandi. I am so thankful Steve is awake and I will continue to pray all is well!!

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14 years 5 months ago #153 by CindyL
Replied by CindyL on topic Re:Steve a/k/a Gort (moved from old Forum)
I'm so glad to hear that Steve is awake and at least somewhat alert! I'll keep sending good thoughts and prayers to his family.

Thanks, Sandi!

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14 years 5 months ago #161 by snowgoose
Replied by snowgoose on topic Re:Steve a/k/a Gort (moved from old Forum)
That is the first step in the battle won! Thank you God for answered prayers. Praying that you will continue making steps towards a full recovery Steve.

Love and prayers to you and your family

Vanessa :)

Thank you so much for passing on this good news Sandi.

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14 years 5 months ago #163 by tofer
Replied by tofer on topic Re:Steve a/k/a Gort (moved from old Forum)
Steve will be again in my prayers tonight & everyday. Until he can respond and tell us he's praying for us. <giggle>
Hang in there Steve.

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14 years 5 months ago #173 by gsh
I'm so glad he's woken up. Way to go Steve! Thanks to his family for letting us know how he's doing. Thanks for posting updates, Sandi.
Giselle

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14 years 5 months ago #181 by tigereyes
Replied by tigereyes on topic Re:Steve a/k/a Gort (moved from old Forum)
Thats great news that he has woken up. Any news on an address for him?

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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14 years 5 months ago #185 by julia
Replied by julia on topic Re:Steve a/k/a Gort (moved from old Forum)
:woohoo: Come on there big Steve!!!! Great news! Still a long way to go but im sure he will fight the good fight. We use a very small portion of our brains and even though some of it cant repair itself we can train other parts of our brains. Prayers to Steve & his family for the work still to do but they must have been extatic to walk into that room & see him sitting in the chair. Go gettem Tiger!
Julia

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  • 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 5 months ago #193 by Sandi
Replied by Sandi on topic Re:Steve a/k/a Gort (moved from old Forum)
Best news yet!


E-mail from Steve's brother (update from Steve's wife)


Steve made good progress over the weekend. The MRI shows that most of the blood that had pooled in his brain has dissipated, and the surgical repair to the blood vessel seems to be working. There is a little blood still there, but the doctors think that it will dissipate on its own over time and does not require more surgery. Steve is awake and responsive to requests. He has spoken a few words, very slurred, but that is good news. He can move his left side, but it appears that his right leg, right arm, and right hand are paralyzed (which is consistent with having a brain bleed in the part of the brain where this one occurred). This could be temporary. In 2007, the last time we went through this, it took Steve many months of hard work in neuro rehab to regain the use of his right hand. Steve is a fighter, and I know he will do everything possible to get back to "normal." whatever that means for him now. Steve's platelet counts continue in the single digits, and we just have to find a way to treat this. Right now, he is getting a treatment called igG every other day. This is the only treatment that has ever worked for Steve (and, trust me, he has tried everything -- EVERYTHING -- over the years, even the weird stuff no one ever tries). Unfortunately, a treatment will keep Steve's counts up for only about 48 hours, so we have to keep giving him treatments. igG is not a long-term solution, because of its side effects, especially lung and kidney problems. I'm not sure how much longer his doctors and I will agree to stay with this treatment. There is apparently a brand new treatment that hasn't even been through a single FDA test yet. One of Steve's specialists in Cleveland is looking into whether we can get him on that treatment.

That's all for today. Keep your spirits up and keep praying for Steve.

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14 years 5 months ago #194 by tamar
Replied by tamar on topic Re:Steve a/k/a Gort (moved from old Forum)
So glad to hear about the progress. Steve, we are all pulling for you, and I hope you're able to update us yourself soon!!

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 5 months ago #200 by Angel85
Replied by Angel85 on topic Re:Steve a/k/a Gort (moved from old Forum)
Good to hear he is awake, and my thoughts and prayers and best wishes continue to be with him and his family.

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14 years 5 months ago #211 by sailorsocks67
Replied by sailorsocks67 on topic Re:Steve a/k/a Gort (moved from old Forum)
This is sooo happy/sad. I can't imagine the horror he must be feeling at not being able to move, or speak. Yet he has awaken. So sad right now.. :(

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14 years 5 months ago #215 by tortie
Replied by tortie on topic Re:Steve a/k/a Gort (moved from old Forum)
That recent news has given me some relief. I feel more positive that he'll be back soon. Wow, what a tough situation.
I hope this next treatment will do it.

I'll keep thinking positive for you Steve, stay tough!

Michelle

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14 years 5 months ago #221 by Siliconvalleygirl
Replied by Siliconvalleygirl on topic Re:Steve a/k/a Gort (moved from old Forum)
Thank you for the update - I've been hoping to hear something positive, and this at least is positive.

I'll continue to pray for Steve and his family.

- Leslie

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  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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14 years 5 months ago #228 by Kim
Thanks for the update, I'm so glad to hear he's coming along and I hope the improvement continues. Please keep us posted.

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14 years 5 months ago #237 by
Got goosebumps reading the lastest update! I'm just so thankful Steve is fighting and my prayers continue!

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14 years 5 months ago #244 by liam12
Replied by liam12 on topic Re:Steve a/k/a Gort (moved from old Forum)
hI IM VERY NEW TO THIS SIGHT,JUST WANTED TO SAY I HOPE ALL WILL BE OK,

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14 years 5 months ago #282 by redmage20386
Replied by redmage20386 on topic Re:Steve a/k/a Gort (moved from old Forum)
good news he's making progress, i hope he's going to be ok

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14 years 5 months ago #284 by lili
Good to hear that he's making progress and I sure hope he continues to recover.

Lily

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14 years 5 months ago #316 by DebbieC
Replied by DebbieC on topic Re:Steve a/k/a Gort (moved from old Forum)
This is wonderful news. Hope he continues to get better. Debbie

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  • 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 5 months ago #404 by Sandi
Replied by Sandi on topic Re:Steve a/k/a Gort (moved from old Forum)
New update from Steve's brother:


Steve is doing well. He continues to make progress on the stroke issues. He can't speak, he has trouble swallowing, and he can't control his right side. They are starting the neuro rehab process to address those issues. They expect that to be a 4-6 month process, perhaps longer.

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 5 months ago #406 by Angel85
Replied by Angel85 on topic Re:Steve a/k/a Gort (moved from old Forum)
Good to hear he is still making good progress.

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14 years 5 months ago #426 by
He's got a long road ahead of him.

Thanks for the update Sandi!

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14 years 5 months ago #457 by tofer
Replied by tofer on topic Re:Steve a/k/a Gort (moved from old Forum)
I hope that Steve's brother knows how much we appreciate his keeping us updated on top of his taking care of Steve. I hope he is reading Steve all our wishes and letting him know that we are all keeping him in our very best thoughts & prayers.

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14 years 5 months ago #458 by tofer
Replied by tofer on topic Re:Steve a/k/a Gort (moved from old Forum)
ooops i double clicked sorry

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  • 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 5 months ago #483 by Sandi
Replied by Sandi on topic Re:Steve a/k/a Gort (moved from old Forum)
Steve does know that we are aware of the situation. His brother told him that I have been e-mailing him and Steve blinked once (for yes). I miss him!

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