my best friend…
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February 5, 2008 at 6:55 pm
my best friend juanita has been in the hospital for over 4 weeks now with gbs, she is paralized completly and is on a respirator, i spoke with her daughter last wednesday night and she said her mom had a bit of movement and it looked like her condition was improving, thursday was a good day as well……i got a call friday morning telling me to come to the hosptial as juanita had went into cardiac arrest and then went into a coma, as i write this she is still in a coma. the doctor told us on saturday that he could not understand why she was’nt waking up, he said the neurologist would be able to tell us more after she has more testing done…..i will never forget the words the doctor said to us, he said – we need a miracle here…juanita is a 45 year old very healthy woman…..i cant understand this and i am so scared for my friend….
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February 5, 2008 at 7:42 pm
Sandra,
I am so sorry to hear of your friend. If you could let us know where you/she are located one of us liasions would be happy to visit and talk to friends and family. Please be strong and know that you all are in my thoughts and prayers.
Jerimy
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February 5, 2008 at 9:46 pm
Sandra ~ I am so sorry; this is so scary. Just don’t give up hope! As Jerimy said, let us know where you all are at so that someone can come and give you support in person. I’ll be praying for your friend and family.
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February 5, 2008 at 9:56 pm
Sandra You and your friend and her family are in our prayers. Did she receive IVIG or Plasma Phresis treatments to stop the attack on her body? I hope that the Doctors do have answers, but don’t feel that you are a bother to any of us to contact the foundation for a liason in your area to speak with. Keep posting to get your questions answered here too. We will keep watching for your updates. Stay possitive you are doing a great job of giving her and her family support.
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February 5, 2008 at 9:57 pm
thank you jerimy and judi for your prayers and concern…it is not looking very good for juanita….i will keep you posted….sandra
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February 5, 2008 at 11:52 pm
Sandra,
Our family is praying for Juanita, her family and for you. Please keep us posted on her condition.
Carla
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February 6, 2008 at 8:24 am
Sandra I have you and Juianta in my prayers I pray that Gods healing powers will touch Juinata and his strength for you and loveones.(Steve)
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February 6, 2008 at 7:41 pm
Sandra,
I see you are in Canada, here is a link to the Canadian part of this foundation:
[url]http://www.gbs-cidp.org/Canada.htm[/url]
Check it out, there should be a liasion close who would be willing to help. If I can do anything at all, contact me through here.
Take care,
Jerimy -
February 6, 2008 at 9:14 pm
hi everyone and thank you…..juanita’s conditions is pretty much the same, she is not responding to anything….the neurologist is going to do a eeg on friday and then they are having a family meeting, which i have a hard time thinking about…….we are praying a miracle is on its way…..sandra
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February 7, 2008 at 12:01 am
Coming out of this “state” can take awhile sometimes. I hope that the family doesn’t give up to soon. I am so sorry that everyone is in this nightmare. I will continue to keep everyone in my prayer thoughts. Hugs to you.
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February 7, 2008 at 1:41 am
Hang in there…Miracles do happen. You will all be in our thoughts and prayers. Please do contact the foundation because the support is so helpful. Don’t give up..
Love and Prayers
Sherry
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February 7, 2008 at 2:28 am
Sandra,
I am so glad you found this site. I do hope you can contact someone locally to get that personal support. I am with everyone else here in prayer. Please tell Juanita that she has an untold amount of support behind her and waiting for her when she awakens.
All my best,
Linda -
February 7, 2008 at 10:47 am
prayers and positive thoughts are being sent to Juanita!
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February 7, 2008 at 11:26 am
I’m so sorry you are all going through this. But don’t give up on your friend! Nothing happens fast with GBS recovery. But I know it’s hard to be patient, especially when you want so badly for her to be okay. Just try to keep up hope, knowing that it could take weeks or months before she comes out of it, but keep believing it will happen. People have made remarkable recoveries from even the worst types of GBS. Make sure her family knows that, and don’t let the doctors discourage them. I know people who were fully paralyzed and in comas from GBS but who now are living relatively normal lives years later. Doctors don’t know everything! I will be praying for Juanita, her loved ones, and everyone who is taking care of her right now. Please keep us posted.
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February 9, 2008 at 5:29 pm
So sorry to hear about Juanita. She will be in my prayers. I was wondering how long she had symptoms before she was diagnosed and how she was treated? Just give her time and remember that recovery can be quite slow. This forum can help so stay in touch
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February 11, 2008 at 10:06 am
hi everyone, i went to see juanita this weekend, since its an hour drive i can only go on the weekends…..she is still in the coma, she will be having an mri done today or tomorrow so that will let us know if there is any damage to her brain, but on a lighter side, juanita and i had this really good friend holly, well after a spat about 13 years ago we lost touch with holly….after lots and lots of phone calls and help from others we found her and she came up to see juantia on saturday…so her 3 best friends were standing around her bed talking away to her and she slightly nodded her head….3 times, so we are taking this as a possitive.
juanita was diagnosed with gbs right after she was admitted into hospital, but she have unbearable leg pain that started after she had surgery in november, she went to her doctor again and again and he kept saying this is normal….well is was’nt, she had a flu shot as well…
thanks to all of you for your thoughts and prayers….so appreciated and so comforting……sandra -
February 11, 2008 at 2:40 pm
[SIZE=”4″]WONDERFUL[SIZE=”2″] news!![/SIZE][/SIZE] Do not let anyone give up on her! All 3 of you saw Juanita move. She is in there ~ just can’t get it all out yet. This is very similar to “locked-in” syndrome. There are several here in our “family” that have been where Juanita is and now they are here on our forums!! Have you printed out this thread and given it to Juanita’s family?? Do they know of this site where we, those of us who have experienced this disease, can be of a great help and support to them??
Thank you for keeping us updated. Please know that my prayers are with you and with Juanita and her family – and her doctors!
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February 12, 2008 at 11:08 am
Sandra, That is Great News!!! Has Juanita been treated with IVIG or Plasma Exchange? Now would be a good time to do either of those treatments. Stay Positive, She will make it through this. You All are in My Thoughts and Prayers. Take Care.
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February 12, 2008 at 2:50 pm
Sandra that is such good news, please send her my best and you all are in my prayers.
Jerimy
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February 17, 2008 at 4:37 pm
hi everyone, first of all someone asked what treatment juanita was given….ivig. she is still in a coma, the mri results were good, her breathing is better, a spinal tap was done on thursday, we should get the results by monday or tuesday. her sister verna told me that the doctors mentioned locked in syndrome, i had never heard of that before until someone here mentioned it, she has the doctors stumped and its great that i can pass information from all you guys on to the family. i thought it was very rare to go into a coma from gbs, but that does’nt seem to be the case….thanks for all your prayers and great information…i have so many questions…how long will she be in this coma? what will happen when she wakes up? what should we expect? thanks again…all of you..
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February 18, 2008 at 4:40 pm
The newest issue of [I]Neurology Now [/I]has an brief mention about Locked-In Syndrome in their letters to the editor. I had never heard of it until I read about it a few days ago. Here is a link to the online version:
[url]http://tinyurl.com/2vvxgb[/url]
In this small blurb, the writer (who has Locked-In Syndrome) recommends two books about the condition, including one called [I]Locked In, Locked Out [/I]by Shaw Jennings, a doctor who apparently had the syndrome. Reading that book might be a good way to get some more information about it if the doctors really think that’s what your friend has.
I hope this helps in some way! I am still keeping Juanita in my prayers.
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February 18, 2008 at 5:34 pm
Sandra, One of the best things you all can do for her is to treat her as if she is looking at you and keep her in the now, up to date on everything. Don’t treat her as if she isn’t awake, talk in front of her, to her, just like she was to answer you back. Read to her, play her favorite music, low. She will come out of it when her body is able to. PP might not be a bad thing to try if she is stable enough, it certainly couldn’t hurt anything to use pp than ivig again. Stay positive, keep the her environment upbeat and very positive. Take care.
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March 1, 2008 at 9:45 am
hi everyone, juanita opened her eyes on the 20th of february…the doctors are amazed….its hard to believe that only a few weeks ago the doctor told us that it did not look good and there was’nt to much he could do and the family would have to have a meeting….the doctors have never seen a case as severe as this one, but the girls on her way back….thanks for all your support…
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March 2, 2008 at 1:55 am
Sandra, That is Wonderful News!!! Stay Positive!! She’s Going to Make It!!!! Recovery is slow!
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March 2, 2008 at 6:22 pm
That’s good news Sandra. Plasmapheresis might really help now. It saved me from paralysis I’m sure. Will pray for juanita.
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March 3, 2008 at 10:44 pm
Sandra,
Please let her know that we are all here praying for her. Onset of these diseases can be so very scary to all. Anything any of us can do to help, please ask. We are here for you all.
Jerimy
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March 14, 2008 at 12:48 am
hello everyone……..it is with great sadness that juanita passed away thursday morning…she had a rough night with a high fever and her heart rate was very high……….the family have requested an autopsy which will be done today…i hope we will get some answers….we all wonder if she had be given the treatment sooner would this have prevented such a severe case of gbs…maybe we will never know….juanita is out of her pain….that comforts me….thanks to you all…..and for always in my prayers…
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March 14, 2008 at 10:38 am
Oh Sandra, I am so sorry and sad. I know that you will miss Juanita. May your memories of your friendship give you comfort. Hugs to you. I will remember you and Juanita’s family in my prayer thoughts.
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March 14, 2008 at 1:15 pm
Sandra, My Heart aches for You and Juanita’s Family. You are All in My Thoughts and Prayers.
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March 14, 2008 at 9:28 pm
Sandra,
I am so very sorry, both you and her family are in my prayers.
Jerimy
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March 14, 2008 at 9:50 pm
Sandra, my heart also goes out to you and Juanita’s family. I work a lot with children with cancer and often tell those families facing a death long before expected that it is not death that is the enemy we fight (for there is a better place for us free of pain and struggle), but it is lack of love. Juanita was obviously very loved. This is evident in your care for her and in the fact that a long lost friend came to see her. I hope that this love that you shared helps to heal your heart and that you come to remember the good times and laughs you shared as the pain of her passing eases.
With Hope for cure of these diseases (and childhood cancer) -
March 16, 2008 at 6:15 pm
Sandra, I am so, so sorry. I have tears in my eyes right now; with Juanita starting to move and open her eyes, this is a real shock! I don’t know why these things happen to such wonderful, loving, special people. It just doesn’t seem fair! I am praying for you and for Juanita’s friends and family with all my heart.
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March 16, 2008 at 11:29 pm
Sandra,
I am so sorry to hear about Juanita. It is difficult to lose someone we love and when we lose someone to GBS we all seem to feel the pain. Remember that we are all here for you. Tell the family there are so many of us out here praying for them. Together we can all conquer this.
Love and Prayers
Sherry
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