I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: lola on October 08, 2008, 08:25:52 AM
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K everyone Otto is at the Hospital now being tested, they told him it's looking good. I just got back from work and am waiting for him to say it's a go so I can get the kids and go. Let me tell you how fun it was to drive 62 kids this morning after hearing that news, and it was bus evacuation day on top of it. Please keep Otto in your prayers as they told us a year ago this day would never happen, can't wait to see that Dr today because I will be looking for him for a little :sir ken; and :Kit n Stik;
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:yahoo; Wow! Wonderful news! :clap; I'll be hoping and praying that things go well. :grouphug;
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:bandance; :yahoo; :bandance;
OH LOLA!!! Great, fabulous, wonderful news!
I am praying hard that this works out!
:cheer: O :cheer: T :cheer: T :cheer: O :cheer: ! :cheer:
Whooooo!! :flower;
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You are in my prayers too! take care
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This is the best news!! Congratulations to you and your family.
xoxo
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I'm excited too and hope for the best possible news when I check back here later. :grouphug; :cuddle; :grouphug; :flower; :cheer: :flower;
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:yahoo;
Keeping my fingers crossed for him!
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That is wonderful!!!!! I hope everything is OK!! How exciting!!
Beth
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:yahoo; :cheer: :clap; Please keep us posted. This is wonderful news. :2thumbsup;
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I just spoke to lola. She said, "This is Otto's kidney!" :yahoo;
She cannot get online but wanted to let everyone know that the surgery is scheduled for tonight!
The difficult part is that the kidney is coming from a child and this is heartbreaking for parents.
Please say a prayer for the donor and family as well as Otto and lola.
:grouphug;
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Wonderful news for Otto and his family. Nobody deserves it more.
My thoughts are with the donor family.
Much love to our Amy!!
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:grouphug; What a wonderful thing those parents did. I can't imagine. Prayers and thoughts for all. :cuddle;
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wonderful news hope all goes well :flower;
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:yahoo; oh boy, this is absolutely amazing.
I will be praying for Otto and for the donor family.
Lola, I am so happy for you and your family! :cheer:
:grouphug;
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Great news!! I hope all goes well, good luck :thumbup;
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How exciting! I am sitting here in tears. You have worked so hard to find a kidney, trained for home hemo---and now you are rewarded with a kidney for Otto :yahoo; I will keep all of you in my prayers and the family of the donor. What an incredibly sad day for them. But, how wonderful they made the decison to give the gift of life. This is truly a prayer answered. Love to all of you :grouphug; :grouphug;
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My prayers for all involved in this: donor family, recipient family, medical team, friends and IHD, that miracles like this continue.
Ann
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LOLA!!!!!!!!!!!!!!!! i AM SO EXCITED!!!! CONGRATS TO YOU AND YOUR FAMILY!!!! Prayers are going out now for your donor family, thy are truly amazing people... love to alll. You have made my week!!!!!
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
Kim
P.S. I vote for you to win who loves IHD the most when you get back >:D
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:bandance; :bandance; :bandance;
Awesome news!
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I talked with Lola around 5pm Central and she said surgery was scheduled for 8pm central. So as we speak Otto either has a new kidney or is in the process of receiving his gift. God bless the child's family during this painful yet joyous occasion.
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It is amazing to think about this happening right now!
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How wonderful!!! :thumbup; Prayers going up for Otto and the donor family. :clap; :clap;
Love, Mimi
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:cheer: :cheer: :cheer: Wooohooooo Amy, Otto and Family!!! Wooohoooooo :cheer: :cheer: :cheer: :cheer:
Thats fantastic news. I hope everything goes smoothly and Otto is home chasing the kids soon. :bandance;
Hugs to the donor family. What a wonderful gift you have given. :cuddle;
(I only wish our donor rates were as good as yours!!! :bow; )
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Just spoke to lola at about midnight for her - she was still waiting to hear of Otto coming out of surgery. She said they took longer with prep so didn't start until 9:30 or so. She will stay at the hospital tonight. Her mom is staying with their kids.
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:bandance; YEA
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I'm sitting on the edge of my seat. I will keep praying. :bow; :cuddle;
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Here is the latest. http://www.caringbridge.org/visit/ottomachado
Otto just came up and I have a few prayers to ask for.
1. pain to go away, meds not really helping much
2. bleeding to stop, they have had to change dressing as he has not yet clotted.
3. urine output to increase.
4. for out little HERO's family to find comfort in knowing we cherish there gift and can never say thank you enough.
will update as Otto continues to improve which i know he will.
********UPDATE*******
We have been told no flowers, so if you were thinking of doing this Thank you but please save your money and just pray.
Also we are asking for now no phone calls and no visitor's. I know you want to come see Otto but today he's hurting pretty bad and we ask that today please let Otto rest. If you need to get ahold of me call my cell. Thanks everyone...........
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We are praying for Otto and the donor's family and your family Lola. :grouphug;
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Hi ,
So sorry I have not been on too much lately!
Such wonderful news for Otto and Lola, I sure hope
everything goes well! :clap; :yahoo; :clap;
Anne
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THANK YOU GUYS :grouphug; :grouphug; I just came home to sleep for a few :sarcasm; hours. Otto is in alot of pain and it's really hard to watch. His labs have not come down yet but they said it's because the kidney is in shock. Our little hero was only 7 and this was VERY hard on us as we have a 6 & 8 yr old(also a 11 yr old) but he tested at 0% and for someone with a pra of 100% this was better then winning the lottery no IVIG nothing!!!!! Please keep our little Hero and family in your prayers I can't imagine the pain they feel now.
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:flower; I hope each day gets better. Take care lola! :cuddle;
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:grouphug; lola. Please try to get some rest. I know exactly what you are going through. :cuddle;
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I am sorry to hear that Otto is in so much pain. I hope he starts feeling better really soon :grouphug;
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Thinking of you all and waiting for things to start going in the right direction. :grouphug; :flower; :grouphug;
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Bless his heart! I hope he feels better soon...wow what a truly wonderful gift that family shared with yours....
Beth
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Otto's kidney tonight is starting to take baby steps in the wright direction :bandance; :bandance; poor little thing is in shock. Otto is still having major pain, they said it;s muscle spasms in the incision site. Thanks for all the prayers.
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Lola, I have everything crossed. :grouphug;
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So happy to hear the good news :2thumbsup;
We sure do want them to get that pain thing under control.
Tell Otto we are sending :bestwishes;
And for Lola a :cuddle;
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So happy for Otto and the family for this wonderful gift, and so sorry about the child this gift comes from, my thoughts and prayers are with them and I hope it will help them to know what a wonderful thing they have done by donating. Prayers to all... :grouphug;
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Hoping Otto's kidney continues to improve :thumbup;
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Prayers for you and Otto and the donor family. Bless you all :grouphug;
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Otto has had another really tough day. He has had the hiccups for over 20hrs and because of them he :puke; all day. He also is getting insulin because his sugars are to high. I talked with the Dr's as Otto has never had this before and they said it's from all the meds and the kidney still not doing everything it's suppose to do, they said it could last any where to a few days to forever. Today someone e-mailed us a picture of our donor as his obit was in the paper and I just bawled.
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Holy cow! I cannot imagine how much that can hurt with hiccuping on top of surgery!
Poor guy, I hope he gets better.
xoxoxo Awww lola, I know you must have really felt that family's angst. :cuddle;
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Oh Lola. I hope tomorrow is better. :cuddle;
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I haven't been online much lately, but just checked in and saw this. Many prayers for a fast recovery for Otto and may God bring comfort to the donor's family.
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Lola,
Please don't feel so guilty about your sweet donor, you have to remember that you are doing something for the family that they will live with forever, knowing that their sweet child didn't pass in vain, its hard to imagine this now, but it is the truth...
You and your family are in my thoughts and prayers
Kim
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Congrats! I hope the kidney kicks in full gear soon!
This gives me hope...that I will eventually get on the list..transplant cordinator called me about a month ago just asking for another blood test...I think I almost needed a heart transplant when I saw her missed call! :rofl; I can't even imagine how he felt getting the call!
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:cuddle;
Hugs to both of you. Hope things get better for Otto soon.
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Lola, :cuddle; I too pray that Otto is doing better. My husband also had the hiccups for I believe days and they finally gave him some kind of medication to relieve them. Please know we have you all in our thoughts and prayer. :grouphug;
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Well the hiccups are now only coming in spurts. Thank God, but he now has pneumonia and VERY high blood pressure they won't even let him walk because it goes up so high just sitting up in bed. This was suppose to be so easy like last time. Thanks for the support :grouphug; :grouphug;
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oh, lola, I'm sorry Otto is having a tough time (and that's putting it mildly, isn't it?). Hang in there (and tell Otto to, too). Just keep thinking, "When we get through this, he'll have a functioning kidney. When we get through this, he'll have a functioning kidney. When we get through this, dialysis is in our past. When we get through this...." Maybe those thoughts will carry you a little of the way.
I'm sending you love, hugs, congratulations (a kidney :yahoo;), and prayers that things will start to turn around soon. In spite of everything that's going on now, remember that Otto is lucky. He has a new kidney and a lola -- how much better can it get for one man?
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:grouphug;
I truly hope Otto has a smoother transition
And God Bless the Donor Family
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sending some :cuddle; your way
and :bestwishes; for Otto's speedy recovery
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I hope Otto feels better soon. Last I talked with Lola, Otto developed double pneumonia. I hope these antibiotics clear this up soon. Hope the blood pressure gets better too. Your family is in my thoughts and prayers. :grouphug;
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The latest.
Hey everyone thought I'd update while Otto is resting. Things have been a little tough as this time around things have not gone the way we planned, we know we are on Gods' plan but wish there were not so many "bumps" in the road. I spent the night with Otto as he didn't want to be left alone, he is scared. They have had to give him more blood and then he'll have labs once that is done. Otto's body is under a lot of stress because of the infection in his lungs and because of that his new kidney has decided to go to sleep, this is something we were praying would not happen but as I said we are on Gods plan.
I want to say Thank you so much for all the prayers for Otto, myself our kids and our donor's family, the cards and food are also greatly appreciated.
Everyone keeps asking how long this will take to get better and when Otto will be out of the Hospital but we at the moment go lab to lab.
Also the kids at this time don't really know everything that's going on as this is already is a scary time for them, but they are being well taking care of by family. I stopped at the house last night to give them all big hugs.
Keep on smilin.......Team Machado
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Lots of prayers are going out to Otto, your family, and your little Hero's family. I am praying that the healing process speeds up and that the little kidney kicks in! I am praying for strength for you, Lola - you will keep finding the strength.
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Thinking of you, Lola and Otto, and sending hugs and prayers to all. :grouphug; :grouphug; :grouphug;
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Lola :grouphug; I keep saying prayers. :cuddle;
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All my thoughts and prayers are with your Otto and your family Lola. :grouphug;
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Lola... hugs and prayers for a speddy recovery :grouphug; :cuddle;
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Lots of love to you and Otto. Prayers for a good recovery. :grouphug; :grouphug;
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I am praying hard for Otto and you ...Boxman
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:grouphug;
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Good luck Otto. Hope all goes well with a speedy recovery.
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Otto has only made steps backwards so after having to :Kit n Stik; the Docs Otto had a repeat x-ray, is suppose to be getting breathing treatments, repeat ultrasound and now is down in D :'( I made it very clear that if ANYTHING happens to Otto or his new kidney because of there wait and see method there would be BIG problems. Sometimes you have to remind Dr's that they are NOT God they are human and make mistakes. I'm home to try to get some sleep as I'm running on empty and I need to be the best :cheer: for Otto to try to keep his spirits up.
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:boxing; Keep fighting and continue the good :cheer: support - I hope things level out and improve - hang in there lola! :cuddle; :cuddle; :cuddle;
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Things will get better. We are all rootin for you Otto. 8)
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Im praying for you Otto!!!!!!!!!!!!!!!!!!!! I pray that you are doing better and that new kidney has woke up and has you peeing like crazy!!!!
God Bless and keep the faith!
Lori/Indiana
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Hope you had a good night's sleep. Make those docs earn their salaries today! :cuddle;
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I'm sorry Otto is having such a rough time of it! I hope today brings a huge improvement. Many prayers for both of you!
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Here's the latest posted by Lola this am on CaringBridge:
"Keep your fingers crossed Otto's showing signs of improvement. He's still needing blood but at least it looks like the kidney is waking up, one person said it's because of D but I told him his creatine hasn't been under 5 in a year. All the prayers are working keep it up."
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:2thumbsup; C'mon little kidney - keep going!
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:grouphug; Otto. We are all praying for you. :cuddle;
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:grouphug; Otto. We are all praying for you. :cuddle;
Absolutely!
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:grouphug;
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UPDATE from http://www.caringbridge.org/visit/ottomachado
It is 5pm in MN, and how quickly things continue to change!!! Otto is in surgery- an ultra sound of his abdomen showed bleeding and that the new kidney probably was not getting adequate blood flow- he has received several units of blood since Sat, & today is count was still 7.4. Very tough to understand these MD's and their decision making- hard to be a nurse at times like this. Amy is beside herself with worry- of course they have to talk about the possible problems with putting someone to sleep who has pneumonia, a low hemoglobin, on dialysis---- what more???????????? Not sure how long this will take , the 1 MD said it could be several hours! I will try to keep this as updated as I can- we are not saying too much to the kids, but they are not happy that they can't go see Daddy- they are very lonesome.
Keep on prayin' , Mom
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Otto went into emergency surgery today. Please keep Otto in your prayers as they try to save his new kidney.
:oops; we were posting at the same time Karol.
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:banghead;
we are praying for you Otto and family!
:grouphug;
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Otto went into emergency surgery today. Please keep Otto in your prayers as they try to save his new kidney.
:oops; we were posting at the same time Karol.
Great minds. All good thoughts headed for Minnesota :cuddle;
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:grouphug; Otto :grouphug;
:grouphug; Lola and Kids :grouphug;
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My prayers are with you.
Is there any remover of difficulties save God?
Say praise be to God.
He is God.
All are his servants and all abide by his bidding.
A prayer from the Baha'i Wiritngs
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Positive thoughts headed your way, Otto.
:grouphug;
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i have been following this thread throughout the last few days.
Thinking and praying for you, i know everything will be okay.
Amanda
xxxooo
:grouphug;
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I am so heartbroken. Strong thoughts and prayer and many arms around all of you. :grouphug;
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There is no way to express the sadness that is in our hearts this morning when we received the new message from CaringBridge. We are praying for Otto to have the strength he needs to heal quickly. We are praying for you Amy and your kids and Otto's parents too.
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Heartbreaking news. I'm sending healing thoughts and prayers and love to all. :grouphug; :grouphug;
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Millions of hugs are going out to you and your family. God be with you all. I truly appreciate you sharing your story with us.
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The latest info from Otto's caringbridge site:
WEDNESDAY, OCTOBER 15, 2008 12:52 AM, CDT :
Otto is in ICU and is a very sick man, the kidney was encased in blood and cracked in half there for Otto lost the kidney. I am devastated beyond words, because of the pneumonia he had a tough time in surgery the next few hours are critical. Otto is strong and has to pull thru as I'm not done with him yet. Please say prayers.....Amy
WEDNESDAY, OCTOBER 15, 2008 08:19 AM, CDT:
It's the Mom again--- can't believe how therapeutic this is to write & keep others updated. Did not have the chance to do this when Dick was ill and had the 'site'.
They are trying to wean Otto off some of the sedation meds to get him breathing on his own so they hopefully can take him off the ventilator. he still has an irregular, very rapid pulse, which they are giving him meds for.
Amy told the kids this am that the doctors had to remove the kidney- felt she needed to be the one and that they not hear it by accident from someone else.
They are off from school after today till Monday, so hopefully they can come see Dad & then we will do some fun things- like Mall of America- that even sounds good to me-- after I get a nap.
All your messages mean so much to Amy, she was on several times during the night just reading- she gains strength from all of you. Thank you from the bottom of my heart. I wish Otto's Mom could read them, it would help her!!!
Will keep you posted as the day goes on! Mom
:grouphug; Love to all of you Amy.
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That is so unfortunate. I know Otto will pull through. He is in my prayers.
Adam
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:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Amy and Otto. we will be praying for both of you. :grouphug; :grouphug; :grouphug;
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i'm at a loss for words. i'll think of something and otto and amy will be in my prayers.
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Amy, you are constantly on my mind. Love you.
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I am praying for you, Otto and Amy. And for your children as well. Please keep us all updated!
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Amy, Otto and family, this is heart-breaking. My prayers are with you all to find strength to get well and get through this. :grouphug;
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If you haven't already posted a message on Otto's caringbridge site but would like to - go to http://www.caringbridge.org/visit/ottomachado and click on guestbook - as I recall you need to sign up - then post your message, click preview to then scroll down to check your message, then save to send it. I know getting through Jenna's medical challenges was a little easier for us knowing that people checked in on us, and sent words of support.
:cuddle;
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I heard from Amy. Otto is stable now - thank GOD. :thx;
I believe she said a cardiologist will need to see him next.
Hang in there Otto! :cuddle;
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Thanks for the update Karol.
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Thanks for update and thank goodness that Otto is stable.
:grouphug;
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You are in my thoughts and prayers everyday :cuddle; :grouphug; :cuddle; :grouphug;
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Steady Otto. :grouphug;
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Keep staying the course, Otto. We are all praying for you. You can do this!! :cuddle;
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My heart is heavy...
...so sad...
...hang in there, Otto and Lola!
I will pray for you and all those who love you and are there with you.
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Tonight'd CB post:
WEDNESDAY, OCTOBER 15, 2008 09:19 PM, CDT
Wed. eve- We finally talked to the surgeons. Alot of our questions were fairly well answered, but time will tell. Very complicated situation and they tell us that he kidney actually ruptured due to the inability of the blood to leave the kidney. The blood went in, but then began to clot at the top and worked its way down. People die from this when it happens, and she feels they were extremely lucky to have gotten him to surgery when they did.
His heart went back into regular sinus rhythm this eve,THANK YOU GOD, so if all stays the same, they will take out the breathing tube in the am. Then I can bring the kids to see him. We finally see a few positive signs, however no kidney--- Know Otto is going to have a hard time accepting this, and he was not happy to be on dialysis.
Amy & his parents are staying at the hospital again tonight- they are exhausted--but Amy will try to sleep tonight.
Will add to this in the am-- Thank you ALL for the support- Amy is overwhelmed!!! Mom
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I'm so sorry Amy & Otto. My thoughts and prayers have been with you through this whole ordeal. :cuddle;
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today's news:
Otto had a very stable night, they will be starting to turn down the vent. His heart also stayed out of afib so they will get him off those meds also. I went in at 2:30am and he opened his eyes and put his hands up to write, so we got him paper and pen and he wrote in BIG letter and circled it MAYO NOW 99% Dr error. I explained he had to stay here I did warn the Dr's last night once he's up and has the vent off he's probley not gonna be a happy camper and they needed to take time to explain everything to him so that he's not so angry, but really do you blame him. He asked about the kids and was concerned how this has affected them but we have been very careful not to let the kids know just how bad Otto really was. I told him how many people have been on our site and all the amazing post and he said thank you. Will keep everyone updated as Otto gets off the vent and out of ICU YIPPEEE!!!! Amy
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Otto,
I am pulling for you! Will be praying for better days ahead for you!!!
Lori/Indiana
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We are all praying for lola, otto and family.
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Amy,
What an incredible ordeal Otto has had to deal with...
Thank God for the strength you've found to pull you through this...
Sending wishes of continued recovery to Otto, and hugs to you and children.
love,
kelli
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thinking of you all :grouphug;
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Latest:
THURSDAY, OCTOBER 16, 2008 05:20 PM, CDT
Otto is up on the transplant floor, very weird since we are with out it. Kids came to see there Dad after almost a week of not seeing him, Bryce had such a hard time him and Otto just hugged and cried and of course Otto's mom and I couldn't help but do the same. This is just so hard coming here for what was suppose to be a way for Otto to have a better life and instead came so close to losing him.
I have put my mom's address on because her mail is locked and we felt since we are not home this was much safer.
I still am overwhelmed of the last 8 days yet can't express enough how much all your words have helped me get thru this trying time, I can't wait for Otto to sit down and read them all. THANK YOU
Keep on smilin....Team Machado(Amy)
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I'm so sorry the transplant didn't work out.
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I am home for a much needed break but needed to give :grouphug; :grouphug; to my 2nd family. Today while on D Otto went into afib again, he is very scared of Dr's at the moment but I don't blame him. He had a echo done this afternoon but we have not seen the results. Still in shock over everything. Thanks for all you prayers. I do want to say I hope what has happened does not steer anyone away from a transplant what happened is VERY rare. xoxox
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It is so good to hear from you. You must be exhausted. Try to rest. I hope that Otto will start getting stronger and be able to go home soon. :cuddle;
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Lola, We love you and keep praying for Otto. :grouphug; :grouphug;
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Hey lola - one day at a time. I hope you get Otto home soon.
:cuddle;
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Thinking of you all. :grouphug;
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Get some rest Lola, need to take care of you also. :grouphug;
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lola, I have to tell you that you have amazed me throught all of this, you are an amazing person, and I am proud to "know" you. Love to you and your family
Kim
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It so good for me and my family to hear the survival stories and the rare rejection stories. If I ever do get a transplant, I feel much better walking in with our eyes wide open. Every day, when we get home from work, we give each other a hug and hurry to the computer to get an update on Otto. We think about him all day. You are all constantly in our prayers, and we really appreciate you sharing this time with us, I can't imagine how this must be for you, but we have learned a lot from you. For one thing, we have learned the reality that if I do get that call, my husband will also need to take a good amount of time off work. That's just a detail we never even considered. I don't think he ever thought about how much of an important role he will play in the process, how much I'll need him. Keep the strengh, lola, we're praying for extra doses for ya.
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This update was from earlier today, before lola posted here:
FRIDAY, OCTOBER 17, 2008 03:28 PM, CDT
Today Otto had D and at the end his heart decided once again to go into afib, it was only for about 10-15 minutes but Otto's mental state at present is so frail that he is sure something is now wrong with his heart. Last night he needed me to stay in bed and just hold him as he is so afraid of the next bad thing to happen. He is in with a chaplain now working thru what he has been thru. I am needing sleep and am praying that he will be OK with me leaving to go to my bed and gain strength but I have learned that I can only go hour to hour as I never know what his needs will be. I have told him once he heals he is doing some major foot and back rubs and he has promised me life long ones.
I want to Thank everyone for the power of prayers, Otto is still here for that reason. THANK YOU THANK YOU xoxoxo keep on smilin...Team Machado
I don't blame Otto a bit - his reaction to all this stress is normal - hopefully the next few days will get easier. He's lucky to have a good woman like you Amy. :cuddle;
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Things will be back to normal soon and your family will be able to put this behind you. I hope your family never has to go through this again. :grouphug;
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Keep hugging him and loving him. That kind of loving is as good as any meds the docs can give him. :cuddle;
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:grouphug; :grouphug; :grouphug;
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Love, hugs and prayers to Otto and the entire family. :grouphug; :grouphug;
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Today's caringbridge post:
SATURDAY, OCTOBER 18, 2008 12:48 PM, CDT
I just sat and the Dr and I got to see Otto's biopsie results together, is all I can say is I was right they were wrong I want MD behind my name. Otto did not have rapid rejection like they were so sure he had, the bottom of the kidney started to die from lack of blood supply (blood clot, narrow vein?). I am so angry and told the Dr if only they had taken me more serious we could have saved this PERFECT kidney and Otto from coming WAY to close from losing his life. The Dr could only stutter and say I don't even know what to say I'm completely shocked WELCOME TO MY WORLD!!!! Otto of course is upset. He's down having a repeat chest x-ray to make sure things are getting better and they want to see his diaphragm to see if anything there could be the cause of his hiccups (yep still has them). Otto will have D on Monday and please pray for no afib as this could keep him here longer and maybe off Wall-e. Keep on smilin.....Team Machado
p.s. Greg B it was so nice to come home and see our yard look so nicexoxoxox
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Im sorry once again that things didn't turn out as they should have, and yes i have also learn "not" to trust doctors fully.
Still praying for you otto and "MD" lola.
Amanda
xxoo
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Thanks for the update.
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Just came home so I can shower as a "MD" should smell nice for her pt. Just so angry and trying to not :Kit n Stik; :boxing; :boxing; someone. Otto is so much better THANK GOD!!!!! Still can't get over how close we came to losing him. Thank You sooooooooo much for the prayers, kind words and cards I am so lucky to have you all in my life. :grouphug; :grouphug; :grouphug;
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I will continue to say my prayers for Otto's healing and strength. He is a lucky man because he has you by his side. That is a very good thing!
:cuddle;
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lola, my continued thoughts and prayers are with your family. :cuddle;
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I too, continue to think of you and to send healing thoughts to Otto. Losing the kidney is a huge disappointment but I'm glad that Otto is getting somewhat better. :grouphug;
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Prayers being said everyday for our Otto! Lola, you are so incredible. You are both fighters. I hope you both find strength, day by day. :grouphug;
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:grouphug; Praying for both of you.
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Amy, If I haven't said it before, you are an inspiration to us all. I am so impressed and inspired by your strength. You are the reason your family will pull through this and be ready for the next challenge. You are loved, our IHD girl!!
xoxo
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From yesterday:
Otto had a pretty good day he's just really tired out, his hemoglobin is still only 8.1. Otto convinced one of the Dr's to let him go home this morning but THANK GOD we have awesome nurses who called his regular Doc who then had to come tell Otto no. Otto just wants to get away from there and I don't blame him, the plan is that they will do dialysis(D) in the morning and as long as his heart stays out of afib they may let him come home. As much as Otto HATES Wall-e he knows he'll feel much better once there together again.
I came home tonight to spend some much needed time with the kids, makes me so made to see how this has affected them and for what? Don't get me wrong I am so thankful Otto is alive but this has put such a dark cloud over us that it will take time for me to put my family back together and make kids understand that we WILL find another kidney. I just know that the next time around there will be some major fear.
Thanks again for ALL the prayers, love and support. Also Mom THANK YOU I know you feel like you should be there more for me but I need you most with my babies and I can never say thanks enough for keeping them so hugged and Loved xoxoxox
Keep on smilin......Team Machado
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The strength of your character will get your wonderful family through this. I am so sorry for that happened to Otto and pray for his quick recovery so he can be home once again with his loving family. Best of wishes to all of you.
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Otto is home :bandance; :bandance; xoxoxox you guys
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:bandance; :bandance; :bandance; I'm dancing with you Lola.
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:bandance; makes me want to dance :bandance;
:cheer: or jump up and cheer :cheer:
:2thumbsup; it's thumbs up :2thumbsup;
:clap; and deafening applause :clap;
:yahoo; a big yahoo :yahoo;
for Otto and his team :flower;
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FANTASTIC!
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:grouphug;
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:yahoo; YEAH BABY!
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:grouphug; lola. So glad you got to bring Otto home. I pray that things will continue to improve and you can get some much needed rest. :cuddle;
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Glad Otto is home! :yahoo;
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Great news! You both need to be home and rest. Lola, let others help. You must be worn out. Love to you both :cuddle;
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Lola and Otto, I haven't posted much lately (see 'where is Rose 1999' post) but I have been thinking about you both and wishing you well. I'm so pleased to share your good news. :grouphug;
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i'm so pleased to hear otto is home!! :)
Amanda
xxoo
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I just set Wall-e up and I thought Otto was going to cry, he's so upset he said he was suppose to be done with this.
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:grouphug; :grouphug; :grouphug;
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:-* love you guys
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:grouphug;
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My heart aches for you, Otto, and your whole family. I'm glad Otto is home and doing well, but I know it must be awful looking at Wall-e again.
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Glad Otto is home. I hope he continues to get better, and that he gets another chance at a kidney soon :thumbup;
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Amy,
You are one of the strongest women I know. I have no doubt your love and perseverance will help Otto and the kids get through. Please remember to take care of you. Know you are loved by all of your family at IHD.
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Just sending love :grouphug;
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Love and best wishes for all of you. :grouphug; Just keep on keeping on.
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How's it going lola? :cuddle;
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Please don't be discouraged, get strong again and move forward. You have many friends here Otto and family. :grouphug;
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Welcome Home Otto! I'm so sorry you had to go through that horrible ordeal! :bestwishes;
You and your family are in my thoughts and prayers, Lola!!!
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So sorry to hear of all the troubles. My heart hurts with you as you go through this bad time.
But Otto is home so it's time for things to get back to normal for him and the children and you.
Time to pick up, brush your butts off and get on down the road again. You are all in my prayers.
Love, Mimi
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I hope otto is feeling better, i cant imagine how hard it been on you all.
Thinking of you.
Amanda
xxoo
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Otto went today and had his staples removed, so hopefully his pain will now start to chill out. Otto's Dr also put Otto back as active on the list since he thought the Dr we dislike(nice words) was being silly to have him wait since it's not like another kidney will become available tomorrow. We also were told that when the call comes we can say the bad Dr is to have no part in his care.
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just checking in :cuddle;
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Amy, how are you guys doing? :cuddle;
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We're hanging in there Thanks :grouphug;
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Otto went today and had his staples removed, so hopefully his pain will now start to chill out. Otto's Dr also put Otto back as active on the list since he thought the Dr we dislike(nice words) was being silly to have him wait since it's not like another kidney will become available tomorrow. We also were told that when the call comes we can say the bad Dr is to have no part in his care.
That's good news, Lola! Keep those cell phones charged!
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:waving; :cuddle; for you and :cuddle; for Otto, too :flower;
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Lola, Otto,
:grouphug;
Rolando and Alene
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I just read this whole thread, what a roller coaster you've been on! May you both find peace with the past month and begin to heal. :cuddle;
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I have decided next time Otto gets the call I will put in the subject line "OMG Otto got the call, get me a drink and straight jacket" :rofl; :rofl; I have to say as weak as Otto is I'm OK if it's not soon as we still ALL are healing and trying to get back to "normal". I am so thankful for you all you have no idea how much your words have helped me. You ALL truly are family xoxoxoxo :grouphug;
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lola, please give Otto a big :grouphug; from us. I hope he gets stronger with every passing day. You keep us updated on everything. :cuddle;
PS I'd like to share the straight jacket with you. :waving;
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Team Machado Hugs all round :grouphug; :grouphug; :grouphug;
Tamara xxxooo :waving;
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:2thumbsup; Drinks all around! :beer1;
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positive thoughts for Otto...Boxman
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Amy you don't need a straight jacket. Just a big stick :Kit n Stik; to keep everyone in line. Ok I agree that a few drinks might help. :shy;
Hugs to you Otto and the kids. :flower;
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Amy, how is Otto doing. Sending you the best. :grouphug;
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Hope all is well lola. How have the kids been after going through all of this?
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The kids are doing OK, is all they can think about is Christmas, we started getting Otto's medical records today and OMG a 1st grader could read them and think something might be wrong. :Kit n Stik; :Kit n Stik; Still waiting for the Dr's reports and then I want a meeting with all the Dr's who messed up, I want an apology and them to say they made a mistake and a guarantee that they will NEVER treat another pt and there family like that again. And if they piss me off anymore then they already have :Kit n Stik; :Kit n Stik; and then I'll let an attorney deal with them.
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Well we get to go back in the A.M to see ANOTHER FREEKIN DR!!! I have been really worried about the way Otto's labs and Hemoglobin have been going down hill and could he be bleeding somewhere and of course they keep saying no that I'm just over reacting. Well they called and Otto has blood in his stool, I asked for this test 2 weeks after he got home from the hospital and they finally ordered it to put my mind at ease. Once again Dr Lola had to push these morons the direction they should have gone on there own. I swear you guys are gonna hear about me on the nightly news one of these days, I just keep documenting EVERYTHING!!!!! I'll let you know how things go.....
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Sounds so exhausting Lola. :grouphug; :cuddle; :grouphug;
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Lola you can borrow the stick anytime. :Kit n Stik; :Kit n Stik; :Kit n Stik;
When you use it try not to make the local news, go for world news tonight!
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:stressed; So frustrating, thank God you are there Doc! :cuddle;
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okay, I'm usually rather non-violent, but here, take this with you :Kit n Stik;
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:yahoo; :yahoo; :yahoo; Finally after how long, the Dr today agrees with Dr Lola and has ordered a CT of Otto's abdomen, he's also having a complete blood work-up and depending on the CT they then may need to do a scope up and :'( down to make sure nothing else is going on. I am praying we may start to find things out.
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That's the trick...Dr. Lola...give em hell. I pray you find some answers.
Ann
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:2thumbsup;
Best wishes to Otto and you
What an inspiration you are to others
:flower; :flower; :flower;
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Otto goes Dec 30th for his CT :2thumbsup;
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Well done Doctor Lola! You should start billing Medicare! :rofl;
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awesome Lola, you have down a great job for your husband
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:Kit n Stik; :Kit n Stik; :Kit n Stik; We just got Otto's CT results and he has a VERY large fluid filled mass on the surgical scar, when would they have listened once he was dead? I'm so pissed, Otto is not a happy camper knowing he has to go back and have something else done because of course we're worried about what they can F@#$ up next. We also are now looking into legal counsel as this was the finally F%^& up.
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Sure can't blame you! :Kit n Stik;
but these are for you and Otto --> :cuddle; :cuddle;
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:boxing; You must feel like punching someone!
Be sure they test the fluid to see what it is. I remember a young man having a similar situation and it turned out to be:
Lymphocele
A lymphocele is an accumulation of lymphatic fluid around the kidney. The lymphatic fluid originates either from the lymphatics of the allograft or from the lymphatics cut during the dissection of large blood vessels in the recipient. Some transplant surgeons prefer to place kidney transplants within the peritoneal cavity to allow lymph fluid to be reabsorbed by the peritoneum. Lymphoceles occur in 1-10% of pediatric recipients of transplants. They manifest as fullness over the allograft, pain, or decreasing renal function. Large lymphoceles can compress the pelvis and ureter of the kidney transplant and cause urinary obstruction. They can also cause venous obstruction.
Ultrasonography is the optimal means of imaging a lymphocele (see Image 11E). A lymphocele appears as a fluid collection adjacent to the kidney transplant. If a question exists regarding the diagnosis, the fluid collection can be aspirated under sterile conditions using ultrasonographic guidance. Analyze fluid thus removed for creatinine level (high in urine leak, low in lymphocele), lipids (high in lymphocele, low in urine leak), and cell count (high lymphocyte count in lymphocele, low cell count in urine leak) to establish the diagnosis.
Treatment options include laparoscopic drainage with creation of a peritoneal window (communicating tract between the perinephric fluid collection and the peritoneum) and open creation of a peritoneal window. Laparoscopic surgery is currently the preferred method of treatment.
that is taken from: http://www.emedicine.com/ped/topic2842.htm
I am so glad you're staying on top of this! Please hug Otto for me. :cuddle;
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Awww, mannnnn. No help from me - just a :cuddle;
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Lola, wish you and Otto could just catch a break. It is hard to understand why you two have had so many mountains to climb. You are doing such an incredible job. Sending you love :cuddle;
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:grouphug;
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I hope you can find some better doctors/center than where you go now.
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Thanks Karol I will make sure to tell them to test the fluid and that I want to know what the heck the results are, since I'll be the one making sure it's treated correctly :sarcasm;
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I to had a failed transplant and very similar complications. I also have been left with a large mass of fluid surrounding the kidney, the doctors say that isn't causing any harm, so they have just left it there... but I have experienced kidney rejection and am having an MRI scan on the 20th Jan and this will provide more information and I will ask the DR what they plan to do with the mass of fluid... thanks to keep us updated. One Love H :cheer:
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well we are getting ready to go and everyone knows this wife is not happy with people there. I have been looking into a different center as I trust NOT ONE Dr there anymore. Otto's care has been pawned off on one person to the next and this is completely unacceptable to me so I need to find some place better for him. This is hard on Otto since the U has been his hospital since he was 10 and has done 8 transplants between him and his brothers but there were WAY to many Dr errors this time around and enough is enough.
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Good Lola, you two make your own decisions...do not let the medical people tell you everything to do.
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We just got home and they pulled 10lbs of fluid he no longer looks pregnant. When they brought him back to the room he said he could not get over how much better he felt, all the pressure and pain he's had for almost 3 months was gone and he was HUNGRY!!!! I took him to the olive garden and he ate like a starving person, how sad that he went through this when a simple CT could have solved this :Kit n Stik; :Kit n Stik; I told them to take all the bottles and put them on Otto's surgeons desk with a note from me as I wanted him to see Otto's "scar tissue" :sarcasm;...We will find out Monday what the fluis is as they have some concerns that it may be urine, please pray this is not the case as that means Otto will have to go back in to have another "mess-up" corrected.....
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:grouphug; You use kit's big stick.
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:banghead; what a bunch those doctors seem to be. I really don't get how they can have screwed up so much.
Hang in there. Hopefully it is not urine because you and Otto are at the front of the line for a break.
:cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
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:bandance; :bandance; :bandance; No more pressure, No more back pain and best of all Otto slept all night in bed the first time since Oct 8th :bandance; :bandance;
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:yahoo; so glad otto is feeling better.
boooooo to the doctors who don't think they should listen to patients and their families concerns. i'm sending my 800 pound blue gorilla to bring you kit's big stick!
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:cuddle; :cuddle; :cuddle; lola. I was so happy to read that Otto slept all night, that has to help his mind set. As for the pieces of shit, that call themselves doctors, fire all of them. Personally, I am sick and tried of doctors that make mistakes and then get everyone in the medical profession to cover up for them. :Kit n Stik; :Kit n Stik; I have the sneaky suspicion that they know a lawsuit is coming. Please know that thoughts and prayers are always with you and yours. :waving;
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:yahoo; Nothing makes me happier than to hear our dear sweet Otto is a bit more comfortable!
Lola, you have great instincts and thank God you're willing to fight for your man! :boxing;
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Good for Otto! There is nothing like sleeping in your own bed (and not in a recliner). You have been such a hero for Otto. Love to both of you :cuddle;
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Lola, I'm so glad that poor Otto has had some relief. Sleeping all night in bed must have felt so fantastic. :grouphug;
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We have heard threw the "grapevine" the Dr's know they F-uped and that is why we have yet to see the bill, there waiting for a lawyer to call? The thing that sucks is it's not just 1 surgeon who was neglectful it was MANY, I'm so happy Otto is finally feeling better but sooooo angry at the same time. I have a busy day on Monday with trying to find out how we switch Transplant Centers but also finding a lawyer who will go after all these people and will do the best for Otto. Otto needs to be a voice so these Dr's learn they need to listen and never let something like this happen again. :Kit n Stik; :Kit n Stik; :Kit n Stik;
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LOLA- taking names and kicking ass and chewing bubblegum, however she forgot the bubblegum! You go girl!
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give me an L :cheer: L
give me an O :cheer: O
give me another L :cheer: L
give me an A :cheer: A
What do you say? :cheer: LOLA!
Say it louder! :cheer: LOLA!
Louder still! :cheer: LOLA!
LOLA, LOLA, she's the one, :cheer:
She showed us how to get it done! :cheer:
P.S. You are an amazing person!
I am soooo happy to hear that Otto is feeling better.
:grouphug;
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YEA...........
WHAT PELAGIA said!!! :thumbup;
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??? I was just catching up on the caringbridge site and I see that Dani broke her leg?? Oh my lola, you really have had a great deal of challenges. :banghead; I hope she is doing ok - poor baby - please give her a big hug from me. How long will she be in a cast? How are you coping? Take care! :cuddle;
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:stressed; :stressed; :stressed; :boxing; Otto's Dr just called and the fluid is back, he has to go in and have it drained AGAIN and also see the surgeon as he feels when they went back in and removed the kidney they did something wrong and he needs surgery to fix it. I swear I'm ready to go postal on this place, hasn't Otto been thru enough when will this end :stressed; :stressed;
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And yes Dani broke her leg!!!! she will be in a full leg cast for 6-8 weeks and as long as it's healing then she'll be in a cast from the knee down for another 6-8 weeks. OMG someone should start a new soap called 'the days of Team Machado" :sarcasm;
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Oh Lola... I am so sorry to hear this...
Its hard to believe how much a person has to go through with this disease :grouphug;
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:grouphug; Lola, my heart is breaking for you and Otto. Please keep us posted on how things are going. I'd probably be killing me a doctor or two about now. :cuddle;
I hope Dani leg heals right, that sounds painful to me. :grouphug;
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:grouphug;
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:grouphug;
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:grouphug;
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Aw Lola, it's unbelievably difficult all you guys are going through. :grouphug;
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Just read your story. It doesn't surprise me any. If a doctor can screw it up he will. And yes they protect and lie for each other. Just read my story.
Hope Otto gets a new hospital and you don't let the old ones near him. Hope you find someone to figure out exactly what is wrong and then will fix it correctly once and for all.
You are certainly a strong woman. You have all been through enough. Praying things will get better soon.
Sorry to hear about Dani. Hope you didn't take her to that hospital. Hope she is better soon too.
You certainly have had your share. May God give you less to bare in the future.
Normie
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they drained 2.7 liters today, 13 days ago 4.7 and they say nothing is wrong :banghead; we meet with the surgeon next Thursday but Otto says he's scared to have me there >:D let me tell you my gloves are on baby :boxing;
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Take a big stick and the gloves.
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If you need any help, Call me. :Kit n Stik; :boxing; :waving;
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Let the ass kicking of surgeons begin with you! :Kit n Stik; :sir ken; :Kit n Stik;
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Lola,
I hope you are able to transfer to a better transplant facility with better care and doctors. I hope something good happens with a lawyer.
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I think you will get better care when they catch on that lawyers are in the wings. :Kit n Stik;
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Lola, I just posted a link to a book chapter on another thread. You might find it useful. It discusses peri-transplant fluid buildup and how it is diagnosed and treated. It's towards the end of the chapter. :cuddle;
http://ihatedialysis.com/forum/index.php?topic=11985.new#new
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Well I'm not in jail >:D Otto is going to need surgery to make a "window" in the pocket the kidney was in and they are hopeing then the fluid can drain on it's own but they can't promise us anything :banghead;
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lola, I am so sorry. :grouphug; Will they let you in the OR so you can supervise. We will all keep Otto in our thoughts and prayers. When are they planning on doing this? Keep us posted. :cuddle;
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:grouphug;
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God bless and help you both!
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:grouphug;
Lots of love and prayers for you all
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Holy crap!!!! How in the hell did I miss this thread??!! I know I was on a long break from IHD through most of it, but geez! I'm an idiot! Anyway, Lola, I am so sorry to hear about poor Otto's ordeal. I don't think I could hold it together like you are. Please give him a hug for me. I am keeping you guys in my thoughts and prayers. :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Otto went today to meet with a second surgeon and he's going in to have a "window" made in the pocket that has not closed and keeps filling with fluid. Otto got to see the CT and this thing is HUGE it takes up the entire left side of his stomach and has pushed everything to the right side. No wonder he's miserable, I csn't get on IHD from the Hospital :stressed; xoxoxox :grouphug;
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Poor guy, that must be so uncomfortable (I recall being pregnant, how squished everything felt!)
When is the surgery?
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it's at noon, he even has to drink prune juice tonight because they can't order anything due to his labs :puke; he really is like a pregnant women
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We will be praying for both of you.
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I am going to think very optimistic thoughts today that they will go in and fix this and get it right. :grouphug;
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Sending prayers for a quick recovery this time!
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I hope the surgery went well today. :bestwishes;
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lola :grouphug; and a smaller, gentler :cuddle; for Otto.
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I hope Otto did well today. I keep praying for your whole family. :grouphug;
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:bandance; :bandance; Things went better then planned, Otto even got to come home a little bit ago. They put a window in the pocket the size of a baseball, he will have the drain in for a few weeks. The docs wanted to keep him overnight because his labs were bad and then do Dialysis tonight but Otto begged them to let him do it at home so they said yes :bandance; :bandance; Thanks once again for the support :grouphug; :grouphug;
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Yay!!! I love great news!! :yahoo; :yahoo; :yahoo; Hugs for Otto! :grouphug; :grouphug; :grouphug;
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Great news hope things keep improving :grouphug;
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I'm sure he's getting tired of this, but please send this to Otto from me --> :cuddle; and here's one for you, too :cuddle; I know you are happy to get some good news for a change. I hope the healing goes smoothly. I also read on the CB site that the kids are all sick. Did you have a flu shot!?!? I hope so...
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:bandance; :bandance; :bandance; :bandance; :bandance;
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So glad to hear that news. :cuddle;
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After the window drains for a few weeks, what do they do then? What causes the fluid to drain there?
I hope he's more comfortable with less pressure, the large hole notwithstanding. BIG hugs for Otto!
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Sending :grouphug; I hope
everything keeps improving for you
Annd
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Let the healing process begin! Sending wishes and prayers your way.
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:grouphug; :bandance; :flower;
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After the window drains for a few weeks, what do they do then? What causes the fluid to drain there?
I hope he's more comfortable with less pressure, the large hole notwithstanding. BIG hugs for Otto!
We are praying after they pull the drain in 3 weeks the window stays open to let the fluid drain and be absorbed or pulled out thru D, over time the "pocket" will close. The fluid is lymphatic fluid that is "stuck" in the pocket, in "normal" people you just absorb the fluid but of course this is Otto so he likes to do things diffrent. There is concern the window will close b4 the pocket putting us back where we have been, that is why they made the window so big.
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Otto has had the drain out for almost 3 weeks(it was pulled early due to pain) and so far so good. :bandance; :bandance;
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Good for Otto :yahoo;
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:bandance; :bandance; :bandance;
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:stressed; well Otto is going in for an ultrasound on Friday as we think the mass of fluid is back WTF!!!! If this is true he would have to have surgery AGAIN to put another window in the pocket!!!!
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Jeeez that's not good. I have heard that it can reoccur - but was hoping he'd get lucky.
You're overdue for a dose of good luck, I think. Sending you some LOVE! :grouphug;
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Sorry to hear this news. I hope it is not what they think. :grouphug;
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Lola, I am sorry to hear this, I know you will keep us posted, hang in there :cuddle;
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Really hoping that this isn't what they think and that Otto won't need another surgery. :grouphug; :cuddle; :grouphug;
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So sorry to hear about this. I am hoping for the best. Please keep us updated. :cuddle;
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:grouphug; :grouphug; Sorry you guys are going through more stuff. You guys don't need this.
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Geez, I was hoping things were going good with Otto.
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:bandance; :bandance; :bandance; no fluid mass !!!!! might just be him holding fluid in his stomach and to pull more off on D :bandance; :bandance; :bandance;
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:cheer: Thank God. :cheer:
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:clap; :clap; :clap; :clap; :clap; AWESOME LOLA!!! :clap; :clap; :clap; :clap; :clap;
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:yahoo; This is turning into a good day.
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:thumbup;
This would be great.
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:yahoo; This is the best news I have heard all week! :yahoo;
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:bandance; Nice! Happy weekend!! :clap;
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:bow; At last a break for Otto. :cheer:
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Fantabulous news Lola!!! Enjoy the relief. :clap;
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Great news! :yahoo;
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Fantastic!! :clap;
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:yahoo;
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2 years later, hope our Hero's family is OK :'(
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:grouphug;