I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: petey on April 01, 2009, 01:09:13 PM
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Marvin got a call at 3:15 p.m. this afternoon. There's a possible kidney for him. He's first in line. The kidney is from out-of-state and is being harvested now. On paper, it looks like a very good match for Marvin. We're waiting for a call-back -- when the kidney gets to NC, they will cross match it with Marvin's blood. If there's no reaction, it's his.
We're so excited we can't hardly stand it. Marvin has had 8 calls in the last 14 years, but none of them worked out. He does have a high PRA (98%), but the coordinator said this looked like " an extremely good possibility" for him. The donor was a stroke victim (and, therefore, in the "extended donor pool" that Marvin agreed to be put in), but the coordinator said the kidney is healthy and appears to be a good one (though not "perfect" because of the donor's stroke). Marvin said it might not be "perfect," but if it's "good," it's better than none.
Waiting...waiting...waiting...Please pray for my Marvin.
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:thumbup;
Sending POSITIVE thoughts and prayers.
after 8 teases it is time.
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You guys are in my prayers. :grouphug;
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Praying also - as I believe God can do great things!
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Finger and toes crossed! I hope all works out petey!!
:grouphug; :grouphug; :grouphug;
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WOW another high PRA gets matched. That is hopeful. Best of luck! I hope all goes well.
:cuddle;
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Awesome Petey!!
Fingers and toes firmly crossed!
:grouphug;
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Fingers crossed thinking of you both :grouphug;
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Oh God please make this work for Marvin. Hey lady we have missed you. Make sure to take care of yourself too.
:grouphug;
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I am not familiar with PRA...?
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:2thumbsup; :2thumbsup; petey........... I am praying so hard for Marvin. Oh my God. I am so excited. Is there anyway you can let us know. I will be glued to my computer all night. That's if I don't get butted off for some reason or the other. Oh Marsha, I really hope that this is the one. All my thoughts and prayers are with you and Marvin. :bandance; :yahoo;
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Thinking of and praying for you!...
May this be the kidney for you!...
God bless you...
Darth...
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Petey,
I'm so happy for you and Marvin. Stay positive this is the ONE. I know how you guys are feeling right now. My PRA was 81% and still I got my transplant on 3/20/09. Recovering at the moment.
This is such a blessing news. My prayers to you both.
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:grouphug;
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OMG Petey I could just cry for U two, so praying this is Marvins turn :grouphug; :grouphug; :grouphug;
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Petey and Marvin, We are all praying this is the one. How wonderful for all of you. Your family has had too many sad moments lately and now need this miracle to happen. Please, dear God, let this kidney be Marvins :2thumbsup;
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Fingers and toes crossed here! :grouphug;
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wow......
i am praying for your marvin..
love kelli
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:grouphug; Hope things work out!!!
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:2thumbsup; :2thumbsup; petey........... I am praying so hard for Marvin. Oh my God. I am so excited. Is there anyway you can let us know. I will be glued to my computer all night. That's if I don't get butted off for some reason or the other. Oh Marsha, I really hope that this is the one. All my thoughts and prayers are with you and Marvin. :bandance; :yahoo;
Holey Moley! everything W&W said! We have been missing you and now this news. :yahoo; I hope it works out for Marvin and his wonderful wife. :cuddle;
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Here's hoping it all works out for you guys!
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:cheer:
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:cheer: Hope this goes through! :cheer:
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So glad to hear this- I hope its for you!!! :flower; :flower; :cheer:
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I went to bed, but am anxious to know if Marvin got the kidney. It is going to be a long night until we find out. Just keep praying :2thumbsup;
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:cheer: Keeping good thoughts !! :cheer:
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:beer1;
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Good luck Marvin, I hope this kidney works out for you :thumbup;
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:yahoo; We've been missing you but what great news to hear on your return. Of course I will pray for Marvin, I hope you'll be able to update us with good news soon. Crossing everything and praying hard, Rose xx :grouphug;
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:flower; Hi!
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:cheer: :cheer: :cheer: :cheer: :cheer:
Yipppeeeeee
Thats Fantastic news Petey and Marvin.
I am thinking no news is good news and the kidney was a go.... :cuddle; :cheer: :cheer:
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No news yet...still waiting...this is agony
For all the other calls Marvin's had, we never had to wait this long. I'm hoping that's a good thing...
It's been a long, long, long, long night. Marvin is actually sleeping a little bit now.
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I hope it works out and he gets this one. I've got my fingers crossed for you. Good luck.
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Oh my gosh Petey/Marvin!! How nerve wracking!!! My fingers, toes and kidneys are crossed(heck they're not working anyway so might as well cross 'em!)...
hoping to hear good news soon!!!! sending positive vibes!
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...still waiting...haven't heard a thing...is no news good news?
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petey, I had trouble logging on my desktop computer and got my laptop out. I couldn't stand it anymore. I know how hard it is to be patient. Len got he's call at 2:30am on Thursday morning and the kidney didn't get to DC until afternoon 12 on Friday. It was horrible and a very nervous time. Remember that the kidneys are the last to be harvested and then there is travel time from who knows where. The weather could be playing a part in this. I keep praying that they will call you soon. I am a wreak just waiting for you, can't imagine how you and Marvin are feeling. :cuddle; I am going to just keep my laptop up and running today so I can keep checking. I am praying as hard as I possibility can Marsha. :bow;
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Really hoping that this is the one. Big hugs to you both. :grouphug;
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Petey the family may have asked for more time with the pt? that's what happened with Otto, they needed a few more hours. Hang in there :cuddle; :cuddle; :cuddle; :grouphug; :grouphug; :grouphug;
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Oh, Petey!
Hoping and praying for you and your Marvin, that this is the one!!!
Wishing you both only the best here in NJ,
Love, Anne and Les
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It must be hard. It seems like an eternity already. :cuddle; :grouphug;
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What a blessing this might be... :cuddle;
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petey, I think it is time to call that coordinator. She has to be able to give you some kind of update. I hate it when they leave you in limbo. :cuddle;
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We took your advice, willieandwinnie, and Marvin called the coordinator. She said, "Your status hasn't changed. You're still first in line. No news is good news. Wait by the phone."
Marvin asked if she could tell him the status of the kidney (been harvested? in route? at Duke and in testing?), and she said she couldn't tell him anything about it.
To be sure, these people know where that kidney is and what's happening with it. Why couldn't they tell us that much? This is frustrating and agonizing. I want to :banghead;
Of course, Marvin has a different outlook. He says with the other 8 calls he's had (none worked out for him), it was much sooner when they called back and said, "It's not for you." He's thinking that the long wait is a good thing. "If they haven't called to tell me no, that means there's still hope," Marvin said. He's telling me to be patient -- have I mentioned that I am NOT (definitely NOT, never have been, never will be) a patient person?
..we're still sitting here waiting.....and praying ...... and hoping ....... and waiting.......
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oh petey. I know how frustrating this is. Len was admitted to WHC and waited 30 hours for the kidney to arrive in DC. We were beside ourselves. The transplant surgeon came in and said, "I promise you are getting a kidney today" but I paced all 5 stories of the hospital because I didn't know what else to do. We are all waiting with you and Marvin and still saying those prayers. Let us know when you can, if you can. We will be sitting on the edge of our seats. Waiting, waiting and waiting. I use to think my middle name was "waiting". Sending positive thoughts and loads of :cuddle;
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I am glad you called the coordinator. The hard thing (besides the agony of waiting, of course) is that you cannot eat or drink if you're going in to surgery. That's a long time to be in limbo. But I know if it's meant to be it will all turn out fine. Petey, I will be thinking of you guys all day.
:grouphug;
:grouphug;
:grouphug;
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Thinking of you both through the waiting. I'm not patient either Petey. Thankfully, at least one of you is. :grouphug;
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We are all sitting here with HOPE. And still praying :grouphug;
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petey, still waiting........ I need to go to the grocery store and I told Len I am going to take the laptop and he looked at me like I had lost my mind. I am not being very patient on your behalf. :cuddle;
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man I'm there with U :banghead; :banghead; I have to go to work and I'm gonna go crazy not knowing!!!! (Sluff or Karol if U here something b-4 6pm can U text me :bow;) :grouphug; :grouphug; luv ya petey and keep hangin in there.
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How frustrating!!! I hope all the waiting pays off in the end. :grouphug;
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Petey the family may have asked for more time with the pt? that's what happened with Otto, they needed a few more hours. Hang in there :cuddle; :cuddle; :cuddle; :grouphug; :grouphug; :grouphug;
I keep praying for Marvin, but Lola reminds us that another family is saying goodbye. My prayers are for them also, during their time of sorrow.
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We are also praying and waiting with you....Saul has called 3 times today from ND to ask if any news, and I thought I was impatient.
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Gawd... I ran to town to get a few things, I looked in here before I went, and as soonas I got back I am back in here looking to see if you got the call yet..
I do agree though, NO NEWS IS GOOD NEWS :)
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Oh Kim..pretty puppy.
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I swear, I fed pets and checked back, I threw a load of laundry in and checked back here, I got stuff out for dinner and checked back here. I also sent petey a message. I am so inpatient and can't understand why it is taking 24 hours for somebody to let petey and Marvin know something, anything. This is something that pisses me off about the medical profession in general. The hurry up and wait that they put you through. Lord, I'll have another couple of hundred gray hairs before the day is over. :banghead;
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I have been unable to check all day and now finally I see that things are still in a holding pattern. I guess it must be true that there is another family someplace that has to deal with a very difficult situation. :grouphug;
I can't imagine being able to remain calm during a wait this long. I will keep thinking positive thoughts that this is all going to work out for Marvin :cuddle;
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We're all here waiting with you.........................and we're all as impatient as you by the looks of it :grouphug;
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Marvin just got the call back. The kidney went to someone in a closer region to the donor. WTF? They said yesterday that Marvin was first in line -- just had to do final cross matching when the kidney arrived at Duke. I wish the coordinator would choose her words more carefully when she calls the first time.
I'm bummed. Marvin's not as bad -- he says it wasn't meant to be his and he hopes the two who got the kidneys appreciate them. I told him I was sure they would because those recipients are probably just like him.
Now, we're going out for supper and a ride through the country. We need to get out of this house.
Tomorrow will be better.
Thank you for all the checks, support, and prayers. I know I'll need you all again tomorrow when it sinks in, too.
Love you all!
Marsha
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Oh petey and Marvin. My heart is breaking for you. I would have some choice words for that coordinator. I am so so sorry. Have a nice dinner and ride and we will be here when you get back. Damn coordinator anyway. :Kit n Stik; :Kit n Stik;
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It's just a matter of time Petey, I know it's not easy when you are waiting but at least Marvin is at the top of the list.
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:Kit n Stik; Damn! how could they be so clueless?
I am so sorry. I hope you enjoy getting out.
HUGS for you both. :grouphug; :grouphug; :grouphug;
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This wasn't the news I wanted to read. The co-ordinator should know how much impact simple words have --first in line in general? At Duke? In the regiion? Our hearts are all heavy for Marvin tonight. Somewhere, people are getting new kidneys, but we all really wanted it to be Marvin. :grouphug; :grouphug;
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I am sorry to hear this. After all of that. Well you got the call so that means you guys are just that much closer. Next time will be your time. :grouphug;
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This wasn't the news I wanted to read. The co-ordinator should know how much impact simple words have --first in line in general? At Duke? In the regiion? Our hearts are all heavy for Marvin tonight. Somewhere, people are getting new kidneys, but we all really wanted it to be Marvin. :grouphug; :grouphug;
Yes, double what Paris said
:grouphug; :grouphug;
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Oh Petey, I'm SO sorry to hear that the news isn't good!... What a dreadful thing to happen...
May God bless and protect you and Marvin... And I pray that the next call's the best one!...
God bless you both...
Love..
Darth...
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So sorry to hear the news. I know we should be happy that someone somewhere is getting a kidney, but I was really hoping it was Marvin's turn.
Here's a :Kit n Stik; for that coordinator. Fist in line means FIRST IN LINE!
We are all here for both of you. :grouphug;
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Oh no....coordinator needs to go back and take some classes on how to do their job proficiently, knowing they are dealing with human beings for God Sake. I hate this for you two. Take a breath now and enjoy each other. Hugs from all of us.
:grouphug;
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Oh Petey.. I checked before going to bed last night and I am here in my pajamas before I go to work... checking on Marvin....
It is sooo NOT what I wanted to read. I am so sorry, your coordinator is a moron. She had the chance to warn you with the first phone call. First in line is FIRST IN LINE. What was she thinking?
The one positive is that Marvin is on the radar and should get another call soon. :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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I just saw this thread and I am so terribly sorry to hear the bad news. After all that waiting and frustration. I'll bet you have no fingernails left, Petey.
Hugs to you and Marvin. I hope and pray another calls comes VERY soon! :cuddle;
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Oh man, that really stinks! I know what it is like to get those calls and you are so full of hope and then to have those hopes ripped away from you. His perfect kidney has got to come soon!
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Petey :cuddle; Marvin :cuddle;
So sorry to hear this, but you are at the top of the list and the PERFECT one will be next
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i too just saw this and got all excited and held my breath as i scrolled though the posts looking for good news and all i can say is pftttttttttttttttt!!!!!! hugs to both of you
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:cuddle;
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WTF is right :Kit n Stik;
I hope this means that Marvin is at the top of the list now.
:grouphug;
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Let this be the One.
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Sorry. Didn't read the Last Post, before I posted. I was just so Excited, to hear that Someone was getting a new Kidney.
It's a Terrible Disease.
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Petey hasn't posted. Does that mean Marvin got the kidney?? I hope!!!
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I'm so sorry, Petey. I was so excited when I saw this thread, I just knew it'd be good news at the end. You two deserve a kidney! Praying for peace for both of you - and a kidney!
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Hang in there guys :grouphug; :grouphug;
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Petey hasn't posted. Does that mean Marvin got the kidney?? I hope!!!
She posted here. http://ihatedialysis.com/forum/index.php?topic=13211.msg227310#msg227310
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Sorry things didn't work out Petey. Always hope for another chance. :cuddle;
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Marvin's niece, nephew, great-niece, and great-nephew came and took us to supper at Marvin's favorite restaurant. They laughed and joked all the way there and all the way back. Our spirits have lightened.
I'm still a little down, but Marvin is okay. He said the ones who got those two kidneys must have needed them more than he did. Marvin said God must know that he can hang on a little longer; he's rationalized that the kidneys went to others who were at the end of their ropes and couldn't hang on much longer. I guess that's a good way to think about it. Besides, Marvin said, that's two more names off the list!
Well, it's time for a treatment, so Marvin's setting up his NxStage machine now. I had really hoped that the one yesterday would be his last, but....
Marvin says tomorrow's another day and he's making plans for all he wants to do tomorrow. His youth baseball team has two games on Saturday (he coaches a nine- and ten-year-old team), and now he'll be there to coach them in their season-openers. And, so, Life goes on....
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Marvin is amazing, I want to be more like him :)
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Marvin and Petey are both amazing.
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well said Pelagia , well said Petey :cuddle;
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:grouphug;
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OH crap I am so upset to read this news.
*hugs* to Petey and kudos to Marvin the lemonade maker!
You'd think the co-ordinator would have enough tact knowing poor Marvin's history of what 8 calls for nothing to be a little more sensitive to his particular situation. I bet they knew there was a chance it would go to someone closer since it was out of state despite giving the "you're #1 on the list" line.
I'm told down here the co-ordinators don't know it's up to the Red Cross who co-ordinate donations/transplants in oz so they are the ones who notify hospitals etc.
I'm still angry and upset for Marvin. As we say down here "How much can a Koala bear?"
off the topic - Wattle goes to work in her pj's? Ohh la la!! :rofl;
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Petey,
I'm so sorry this was not the one. Tell Marvin I really appreciate his attitude. He seems to be taking it well. Please don't loose hope that one day Marvin will get his chance. You both are in my thoughts.
RG
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Marsha and Marvin, I'm like Wattle, in my nightie and dressing gown logging on as soon as I'm up...........you know we all SO wanted to be sharing good news today and we are all gutted. But you are wonderful people, Marvin has a fantastic attitude and of course 2 luckier people today have working kidneys so we must be happy for them. Please God let Marvin be next. :grouphug;
I hope the thought of all of us ladies in our night attire isn't too much for RichMel :rofl;
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Sorry to hear this kidney wasn't the one for Marvin :grouphug;
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Oh, Petey!!!
I feel so badly for you both, but have to say
I admire your Marvin's attitude so very much, and
yours also. My husband has only gotten one call like
this, and I know the feeling, also.
God bless you both
Anne
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:cuddle; Just checking to see how you and Marvin are doing. :grouphug;
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:grouphug; :grouphug; :grouphug;
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Update on the day after the big let-down...
I struggled through today. I went to school but didn't feel like being there, teaching all day, or even seeing people. I think I'm emotionally tired, spent, exhausted, and frustrated. I feel so sorry for Marvin, and my heart literally aches for him and for his having to even go through something like this.
Marvin, on the other hand, said he had a very good day. His family (mostly those grown nieces and nephews that he loves so much -- they're only 10-15 years younger than he is) and his best friend "worried" him all day long (so he said). One came by and asked Marvin to go for a ride with him this morning, and another one took him to lunch. His best friend took him to the ballfield (Marvin's favorite place to be) and spent most of the afternoon "just tinkering" there. Our best friends (married couple -- she's my friend, and he's Marvin's) took us to supper and then we went shopping at Sam's for the ballfield concession stand supplies (we have a day full of baseball games tomorrow -- Marvin's little team plays at 3 p.m. and then again at 5 p.m.).
Marvin's new motto is "Life goes on." He said yesterday may have knocked him down, but it didn't knock him out. He picked himself right back up, dusted himself off, and is going again. I admire him so much.
Now, for more news. The brother that Marvin lost in January to pancreatic and liver cancer had one son from his first marriage (Marvin's favorite nephew). When Buddy married for the second time, his new wife had two daughters from her first marriage -- ages 10 and 2. After Buddy and Leesa married, Buddy adopted the two girls and always treated them like they were "his." Buddy's oldest daughter, Cory, is now 23. She has a four-year-old little girl and put herself through nursing school. She's married to a nice guy and has a good job. Cory came yesterday afternoon when we got the "went to another" news and just hugged and hugged Marvin. Today, Cory called Marvin's transplant coordinator and asked to be tested to be a live donor for Marvin! Cory told me she couldn't stand to see Uncle Marvin so hurt and she felt like she could do something -- maybe. She went home yesterday and talked to her husband, and he said, "Go for it!" She had a "phone interview" this afternoon with the coordinator, and Duke is shipping her the first test kit (blood draws at her local doctor to be shipped back to Duke). Cory is O+, just like Marvin. However, since there's no "blood" tie between Cory and Marvin, it may be a long shot. But, then again, a transplant at all is a long shot for Marvin because of his high PRA.
Cory has given us hope again -- we're not getting our expectations up that she will "match" Marvin, but it is one more try -- and we'll take that. No, today we needed that!
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:2thumbsup; Hope is a good thing!
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Marvin can see you are hurting and so he is trying extra hard to make things look bright. You need to let it go and just look for the next call.
Marvin doesn't need to try and cheer you up too.
I'm so sorry this happened but Marvin has the right attitude and I know you just come on here to vent. I know you probably put a smile on in front of Marvin.
:cuddle;
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It sounds like you two have some really wonderful people in your lives. That's so great!
I know that disappointment can derail you for awhile - I've been there as a caretaker. I think the patient is more resigned or accepting of the situation, at least Jenna was, and I agonized more after each set-back. Jenna was stoic, I was manic. But just when you think you can't cope, someone incredible like Cory comes along, and the focus changes.
I wish you and Marvin the nest - good things will happen.
By the way, the only time a "blood tie" matters is in the case of twins, and sometimes siblings. But often a non-relative can be a better match than a blood relative - it's just not an issue anymore.
:cuddle;
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My heart aches for both of you - but what wonderful family you have, that is a refletion of the wonderful people you are and how much love everyone has for you (and receives from you). I pray for a kidney for Marvin, you can't know how hard I'm hoping for good news. :cuddle;
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Oh petey, bless Marvin's heart. What a wonderful thing for Cory to do. I'll keep a praying. :cuddle;
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Wishing the best for Marvin and you, Petey Your love for each other with get you through whatever life throws your way. :cuddle;
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Hoping the testing will have great results. Cory is a real sweetie! My surgeon keeps telling me that a non-related donor will be the best for me with the PRA problem. My kids don't want to hear that--but they are the reason for the antibodies -- :rofl; We'll all be anxious to hear how things go.
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A very good -- and very busy -- day today. We've been at the ballfield working since 7 a.m. -- just got home. Marvin's team (nine- and ten-year-olds) won both of their games -- 23 to 1 in the first game and 16 to 1 in the second game. I took some pictures, and I'll have to post them.
Marvin can see you are hurting and so he is trying extra hard to make things look bright. You need to let it go and just look for the next call.
Marvin doesn't need to try and cheer you up too.
I'm so sorry this happened but Marvin has the right attitude and I know you just come on here to vent. I know you probably put a smile on in front of Marvin.
:cuddle;
Rerun, you're right -- IHD is my place to vent. In front of Marvin, I put on a "happy, cheery, it-will-be-alright face" and go right on with him. Marvin doesn't cheer me up; I fake it in front of him when something like this happens. Although when we got the news Thursday afternoon, he did look at me and say, "You can cry if you want to." But, I didn't. He rarely sees me cry; I do all of my crying in the shower.
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He rarely sees me cry; I do all of my crying in the shower.
:bow; I'm with you there petey. :cuddle;
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He rarely sees me cry; I do all of my crying in the shower.
:bow; I'm with you there petey. :cuddle;
I do the same thing!
Oh Petey and Marvin! i am so sorry to hear about everything that has happened. Marvin is such a strong person. I sure don't think I could handle it like he is. I will keep you in my thoughts and prayers!
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I missed this thread. So my best wishes to you all a little late.