please pray for Andrea update, from her mom
 

Hello Everyone
Please pray for Andrea,
I just got an update from her Mom, and things have change,

here is a copy of the letter from her Mom,

I guess I was overly optomistic yesterday. Andie is awake, but she does not know us and she seems very frightened. It was a long difficult night. Gus and I took 2-3 hour shifts all day right up till about 1am. Then they brought a big chair into her room where I thought I could rest so I convinced Gus to go upstairs (we have a room in the hospital where we can lie down) and get some sleep. You would think I was new to this what ever made me think I could sleep in a hospital???

Andrea ran a fever most of the night and her heart rate was very elevated. The resident was called in and he listened carefully to her heart and watched over her but there really wasn't much they could do at that point.

It's now late afternoonon Tuesday. I went back to the hotel around 10 to try and sleep and shower but I could not really sleep. But I layed down for a couple hours sleeping off and on.

I am on a break right now they are giving Andrea clean sheets and gowned. I am having a much harder time dealing with this then I thought I would.She looks so frightened she can't talk and her breating is so labored. Gus saw her x-rays this morning and her right lung has fluid in the bottom of it. Dr. Cantu and the heart doctor are watching it carefully. I think I am feeling so bad becasue I can't comfort her.

Anyway I feel like I am rambling but I needed to let all of you know what is going on. Keep her in your heart.

thank you everyone,
Kelly

Hi Folks,

It is no surprise to me.

They needed to get to the root of WHY she has RSD in the FIRST PLACE.:mad: I only hope she is on IV antibiotics.

On a very serious note, I wonder if any MD would of gone thru that treatment themselves.

Hugs, Roz

I'll keep her in my thoughts and hope this clears up soon and she gets better. Sending lots of hugs and good thoughts her way! I've heard the doc there is absolutely the best of the best, so I know she's in great hands.

Hugs,

Karen

Oh Kelly.....this is so disturbing. I pray it is just the residual effects of the medicine and the fever that are causing her amnesic side effects. I have heard it can do that. Let's not give up hope for a full and complete recovery for her. Thank you so much for keeping us posted on her condition. We are all pulling for her and send prayers along to her family as well. :grouphug:

If you really care about your friend, just ask her mom if her sed.. rate is ELEVATED.

On a serious note, your friend is in a sink or swim issue.
FAITH WITHOUT WORKS IS DEAD

Roz,
Kelly is only trying to honor her promise to keep us posted, both at OUR request and at Andrea's.

Elevated SED rate is VERY serious. This is why I steped in.

I am trying to help. The family really needs to know if their is one.



Hugs, Roz

Hi friends,

Lets remember the written word can come across differently to each of us and we may take things one way when the poster didn't mean it to sound that way.

It's really a good idea for each of us to re read our own posts before submitting it, just to check on how it sounds and how it might come across to others.


A reminder -
*We will edit non supportive comments if they aren't edited by the poster themselves*

just a gentle reminder here that this is not the place to have disagreements.

this is a support thread and any personal issues between members needs to be taken to PM please.

thanks

Dear Folks,

I was offered the Coma treatment and IV Ketamine.

My only concern is Andrea at the present time. IT REALLY IS.


Much Love, Roz

Roz,

Try not using caps and maybe bolding parts that you are stressing?

Using capital letters on the internet is considered yelling at a person.

My Prayers and Support
 

Kelly,
I just wanted to let you know that my prayers are with you all. Please keep faith that everything will be alright. You have the support you need here. Know that Andie and her Doctors will be covered with prayers. Keep us posted, please. All the best all of you. :hug: Di

Hello Everyone
and thank you, I just wanted to update you on one of us, she is one of us, she may not be part of the message board, but she is one of us,
no matter what,
thank you for all your kind words, I also send them on to her family so they know there are lot of us out here that care no matter who we are

she needs are prayers now, Roz, I really did not know how to take it what you said, and I am not a Dr non can I ask about what her Dr's are doing there for her, yes I care very much for her as for everyone that is fighting this, monster
please understand, they are in Mexico, and they are not on line all the time,
her family just keeps us posted, and I am sure they are very worried about Andrea, just like I am and so many that do not know her,
we talk before about her heart, pro and she was born with something wrong with it, but its not my place to talk about that on here,
so please understand, its not that I do not care, I can not ask them something like that, she has some of the best Dr's taking care of her and I am sure they know about what to do for her, and god willing, he will hear are prayers and she will pull out of this,
please do not ask me about something I cannot do and then say if I care
I been on line day and night looking for any word about her,
just like I would do for anyone of you,

again thank you all for you support, even you Roz,

peace and love
Kelly

kelly
iam so sorry that she is having problems please let her family know that they are in my prayers i have been in that situiation and it helps for the family to know that peopple care. i pray that she can get better soon

-carrie

Thank you Carrie

To everyone of you, am passing all your kind words on to her family,
and trust me when I say this, they have told me how much it means to them
that Andrea has so many that care,

thank you,very very much,

please and a big grape hug:grouphug:

Kelly
PS:
Karen, did I get any miss spelled words?
for all of you that do not know, my spelling is not the best, so somethings
I will ask Karen to help me, smiles
as she is the one that seen one day I thought I was having a stock,
smiles, so if anyone ever finds something I really messed up, just ask me to please explain it, smiles,

:-D You're doing awesome girlfriend! LOL Although a great big hug is good, I rather like your big grape hug! LOLOL I'm partial to grape anyway. :-D You go girl!

Hugs,

Karen

I might respectfully add, sedimention rate (as is c-reactive protein) is a relatively non-specific test that is never ordered by itself. By itself, it means practically nothing. It could signify an inflammatory situation that is, or has occurred as it will remain high even after the problem has passed, so I guess the my point is that it is ordered as part of a panel that was obtained to confirm certain clinical findings. A positive sed rate in conjunction with other positive tests on the same panel, might have a more definitive and meaningful trend. Sedimentation rate usually is not very significant until it is approaching 2-4x normal and even then, is usually re-run to rule out false positives. So I am not sure where that was going...

Hi,

I hope these lines find you doing well. I am sure they are keeping her vitals stable and doing what they can for that. But in my own case I had Endocarditis, the only thing that showed up was an elevated sed rate. I was DX with Bartonella, with a neg.-blood test.

From my own walk, their are much more false neg-, than positives. I am very thankful I had MD's that knew what they were doing. Hugs, Roz

This is a message from Andreas Mom,
I have not been able to bring my self to sending her a message,
I do not know what to say,

keep Andrea in your prayers,

thank you



Hello again my friends,

It is 2 am and things have not been going well for many hours now. Gus left to go get some rest about 8:30 and things just went down hill.

Andrea had been running a fever and had an elevated heart rate all day. But right after Gus left it just went from bad to worse. Her fever went to almost 104 and her heart rate was 140 and up. She was breathing wya to fast and could not slow it down. Her fingers were purple from lack of oxygen and she was very pale. Not to mention her BP was through the roof. I asked the doctor in the ICU what was going on but he only speaks a little english and I only speak a little spanish we just could not communicate. There was no one to translate.

I was so frightened.Long story short they tried all kinds of things to bring her fever down and nothing worked. I called Gus about 12:30 I couldn't take being alone anymore. Dr. Cantu came in at 1:30 and as soon as he saw her he decided he had to re-intabate her. He said she needed a break she was working way to hard. They are in there working on her now.

Thank you all for your support I don't know how I would do this with out it.

Leslie

Andrea and her family have my prayers..

Hope you are getting some rest Kelly.. I am praying for you too!

:grouphug::grouphug::grouphug::grouphug:

Pauliana

Kelly
 

Kelly,
I am feeling your pain for your friend. Even though I have had no personal contact with her or her family my heart is open and I will keep them and you in my prayers. We will all continue to pray for a positive outcome. Do not give up hope. Please take care of yourself and if you need anything let me know. Thanks for the update even though the news was not what we had hoped or prayed for. We will still have faith that everything will turn out well.:hug:DI

Hi all,

I feel so awful after reading the posts, oh goodness. I dont really know much, would anyone be able to fill me in on what procedure she is having or had? If you feel comfortable. it sounds like she had the ketamine coma? I feel so horrible, I hope everything gets better, I will pray for her right now.

Love shannon

Hi Shannon,
Thank you for your concern and prayers. I will repost a previous post that Kelly6449ed wrote several weeks ago to fill you in:

Hello Everyone

I am asking for everyone to please take a look at this, [contact poster]
I guess I can not add the link for this young lady that has done so much for RSDers
if you would like to get the link PM me, the site is set up to sign in to it, like a photo site page,

This is Andrea she is going to Mexico to be put in to a coma (Jan 29th she is flying out)
Just like Ali she got RSD at the age of 13 she is now 26 and has gone to Germany in 2004, for the coma treatment, she had 9 weeks of pain free
(I talk with her about it and she said she did so much in them 9 weeks
:Head-Spin:)
I can not even imagine what that would be like, I am 44, I had a good life, and lots of fun but being so young and not able to be a young teen and do what kids and teens do, well, that is just so hard to take in, and then it came back her family and her set up this care page for her
I hope that everyone will take the time to check it out and please sign it for her wishing her and her family the best
So when she is feeling better she can go and see that we do care

A little bit about Andrea, she went on to College, instead of just not doing anything, she started a non-profit to help outer, with RSD, she has put all her time in to helping outer. even in so much pain, she has full body also,
She is not going to stop her non-profit when she get's back . that is her life work, and she is good at it,
Her non-profit has given money to family's that needed help,


Her mom is going to keep us posted on how she is doing so we can peek back in from time to time,

Thank you
:Thanx:
Peace

please can we show Andrea that we are pulling for her,

As you have read in this recent thread, Andrea is not doing well. We are all waiting and praying for news of her recovery. We all are pulling for her and offer up our support and prayers of comfort to her family during this difficult time. Thank you for inquiring!!:grouphug:

Thank you so much for sharing this story with me. My heart truly goes out to her and I have pm d you for a link to the website. I feel so terrible and I really hope and I have prayed that she will make it through this. Im 27 and I and Im sure many of us can put ourselves in her shoes. I thought the ketamine coma was it, the one thing that if you had the money for, you would be close to cured. I am sending positive healing thoughts for Andrea. I hope everyone else can pray or send thoughts in their own way. I feel like everyone who has Rsd is like family to me because only we know how terrible this disease is. PLease keep us updated and I really appreciate you sharing this with me.

Love shannon

Thank you Mominpain,
for posting that for me, I been so up set over how she is doing that I just could not even talk about it,

I did talk with Andreas Mom a little bit ago,(IMing) and she is still not doing well,
she thanks everyone on here that have been praying for her daughter,
and well keep us posted, but I am sure they are really worried so I don't think I will hear from them till morning, and I hope its better news,

thank you again everyone,
group hugs
Kelly

Take care of YOURSELF Kelly. You cannot do any more than you have done. You need some rest. Assume you will not hear any more until morning and leave her in the Lords' hands. You can't take any more stress and pain than you're already in.
Hugs to you, my friend!!

Thank you Shannon
you are right RSDers are all like family, and on here, for sure, smiles
Even thou Andrea is not part of this site, only due to she was to busy working on her non-profit, it dose not mean we do not care for her,
I got to know her from talking with her, a lot after I found out I have RSD also and gave me a lot of info, after that, she ask me to be a part of her non-profit and I said yes, we had a meeting and I got voted in I am on the board of directors, now, and helping, but its being put on hold for now,
she really gave my hope that there is more to what we can do, even in pain
she also did K-coma in Germany, but she was the nest to go, but something happen there and no one was going to be going there for a bit, so they got her in to Mexico, and everything was going good till they wake her up, the 1st day was ok, she was a little out of it, and then this,
so again thank you for caring, I am going to keep everyone posted, and keep praying for her,
and this is the 1st time I ever herd of something like happening, so do not think it will happen, to anyone else, she had some heart pro, also, but not from RSD
ok, she is getting the best of care there, and she is a fighter,

thank you again
Peace
Kelly
PS I see you are new on here, welcome and sorry you have RSD also and so young, have you posted about your self?
hoping to see more of you on here, everyone is very kind and helpful, it helps,
to have outer to understand what we go thou,

I just saw on another board that I was mistaken for Andi... since both of our names are Andrea, and we're like the same age, and i too was wanting the ketmamine coma, and ended up having the outpatient ketamine infusion...

just thought i'd clear that up incase anyone else got us mixed up.
<3