I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Rose From OZ on August 30, 2007, 07:57:35 PM
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Hi All
At 3 this morning the hospital called and advised they have a Kidney for Amanda!! The chances to me of this happening before my wedding is like winning the lotto!!! The match was 6 out of 6 which you only get with identical twins!! So its a very good sign only problem os the girl who passed who we have been told is only 27 years old had been on life support for 7 weeks when her heart gave up on her! The Drs have advised she had anamonia but she is 27 and died of anamonia?? Drs dont really know what this girl died off. They dont know if this same bacteria that got her may still be in the Kidney. Drs think it will be hard one and the kidney may not work straight away cause the girl was so sick for so long..
We have taken a risk and we hope its thr right one sooo please pray for us.. She should be out of the operation at 6-7 Sydney Australia time..
Thanks for all your prayers
Rose
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Great news!!!! I will keep her in my prayers that all goes well. What a happy weekend for your family!!!
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OH I AM SOOO HAPPY!!! :yahoo;
I will be thinking of you Amanda.
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Fabulous News. I am thrilled. What a great wedding gift for you.
Give our girl a hug.
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What incredible timing! I will do lots of praying for your family. A wedding, a new kidney---new beginnings for both of you. Please keep us posted (because you will have so much free time) We all love Amanda, so lots of hugs and good wishes going "down under". :grouphug; And special good wishes for you Rose!
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i'm so happy for you amanda you and your family are in my thoughts.
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Hi All
At 3 this morning the hospital called and advised they have a Kidney for Amanda!! The chances to me of this happening before my wedding is like winning the lotto!!! The match was 6 out of 6 which you only get with identical twins!! So its a very good sign only problem os the girl who passed who we have been told is only 27 years old had been on life support for 7 weeks when her heart gave up on her! The Drs have advised she had anamonia but she is 27 and died of anamonia?? Drs dont really know what this girl died off. They dont know if this same bacteria that got her may still be in the Kidney. Drs think it will be hard one and the kidney may not work straight away cause the girl was so sick for so long..
We have taken a risk and we hope its thr right one sooo please pray for us.. She should be out of the operation at 6-7 Sydney Australia time..
Thanks for all your prayers
Rose
Holy Tumoly! Amanda thought she had years to wait for that kidney. This is just more great news with transplant after transplant happening for our IHD members this year.
We might even have to change the name of the site to "I Love My Transplant" if this keeps happening.
Please keep us posted on what is happening and if you could give us some contact information for Amanda at the hospital so we can get the cards and flowers headed her way.
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:'( Happy tears.
I'm so happy for Amanda, thank you for letting us know in such short order.
:bandance; :bandance; :bandance; :bandance; :bandance; :bandance; :bandance;
Male strippers for Amanda's amusement.
We love ya Amanda.
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:oops; I was so excited about Amanda I forgot to tell you Rose to have a wonderful Wedding.
I hope all goes well for both of you. :grouphug;
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Oh man Amanda, Good luck and I hope it all works out for you!
Happy wedding to you Rose!
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Rose!!! Wow!!! :yahoo;
Oh Manda May - what sweet, fabulous, incredible news!
I am so happy to hear this and I have said an extra couple of prayers for her!
The wedding will be so beautiful Rose, and you'll have to stop in at the hospital for a special wedding photo with Manda.
:yahoo;
Best wishes Rose, to you and your family! :cuddle;
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:yahoo; Yay!! Congratulations Amanda!! I will definitely say a prayer for you!! :2thumbsup; I hope everything goes perfectly!!!
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congratulations- I am so happy for you and all your family's blessings. Couldn't happen to nicer people. :clap; :clap;
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Hi All
At 3 this morning the hospital called and advised they have a Kidney for Amanda!! The chances to me of this happening before my wedding is like winning the lotto!!! The match was 6 out of 6 which you only get with identical twins!! So its a very good sign only problem os the girl who passed who we have been told is only 27 years old had been on life support for 7 weeks when her heart gave up on her! The Drs have advised she had anamonia but she is 27 and died of anamonia?? Drs dont really know what this girl died off. They dont know if this same bacteria that got her may still be in the Kidney. Drs think it will be hard one and the kidney may not work straight away cause the girl was so sick for so long..
We have taken a risk and we hope its thr right one sooo please pray for us.. She should be out of the operation at 6-7 Sydney Australia time..
Thanks for all your prayers
Rose
hey Mander Pander Great news!!!!! i sincerely hope everything works out for you, you will probably forget about us now :'( anyways i will keep you in my prayers girl...
Rolando
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Geez who we gonna chase around in the chat room now? LOL
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:yahoo; fantastic news, hope everything goes a-ok. both of you have a wonderful, wonderful day.
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Yipiee and Yeah for Amanda! I pray all goes well for years and years to come!!
:beer1;
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Fantastic news. Hope it all goes well. Good to know that people are still donating. Good luck and I know you will home soon drinking lots and lots. Take care. Liz :ausflag; :bandance;, and Rose, be sure to post some photos of your wedding. I bet you looked beautiful. :waving;
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WOOOOHOOOO :yahoo; :yahoo; (running around the room waving arms in the air)
YIPPPPPEEEEEE :bandance; :bandance; :bandance; (doing a little jig)
Amanda, I am so happy for you. I hope everything goes smoothly and you are home soon. :cuddle;
Rose,
Thank you for posting and letting us know. Have a wonderful day tommorrow. I can't wait to seee the photos. :clap;
Sally
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Great news Amanda!! :bandance; :wine; :thumbup; :2thumbsup;. Hope everything goes well. Keep us posted. Have a great wedding Rose.
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Congratulations Amanda. I hope everything goes well. :clap;
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:yahoo;
Amanda, that's wonderful!! Wishing you many years of health and happiness!!
:yahoo;
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:yahoo; Mans good luck, Rose please keep us up to date as I know this is a very crazy time for you. This is such an amazing time for IHD :bandance;
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Congratulations to Amanda and I hope everything goes well. :thumbup;
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oh wow.. that is amazing news...
and just yesterday the nurses at my unit told me LAST WEEK they had *3* cadaveric(however you spell it) transplants from our group of patients...
Gosh I hope I am soon.. but Amanda has been waiting a long time.. so that is wonderful news.. and 6 out of 6 matches is wonderful....
HOORAY!!! Fingers crossed for everything..
and Rose.. have a wonderful wedding! :)
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YEAH Amanda!!!!!! So excited for you!!! All these transplants this year, this is just fantastic!!! :bandance; :bandance; :bandance;
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Congratulations Amanda, Hope the transplant functions well for a long time and your recovery is quick and uneventful.
Happy wedding Rose and many, many happy years may it last.
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:clap; :clap; :clap;
EDITED: Fixed smiley icon - okarol/moderator
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Yeah and congrats to both of you! :yahoo;
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:yahoo; :yahoo; :yahoo;
Best wishes to you both!!!
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FANTASTIC NEWS !!!!! THIS IS A WONDERFUL DAY !!!
Sending Hugs & Love, kelli :)
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YAY!!!! What a wonderful wedding gift for you, Rose, this is just wonderful!!!!!! :clap; :clap; :beer1; We will be praying for both of you, you for your wedding, and Amanda for the operation! :grouphug;
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:clap; Two anniversaries to celebrate together each year. :yahoo; I am so happy for Amanda. Thanks, Rose, for posting the good news. I know she will not be happy about missing the wedding but there is no better reason!! I think the girl's family would be glad to know that the kidney is going to such a wonderful person from such a grateful family.
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Thanks so much for sharing this wonderful news with us, Rose! Our caring thoughts and prayers are with Amanda, and with you, as you are both starting out on a new road. May everything work out to your best happiness for both of you.
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YAY AMANDA!!!! :yahoo; :yahoo; :yahoo;
I also had a perfect match, and I hope yours works just as great as mine is. No more dialysis for you!!
Thinking of you! :) :grouphug;
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:bestwishes; Such incredibly news Amanda. Now don't forget us poor dialysis patients, we'll be looking for ya in chat as soon as you're well enough to get back to us. :bestwishes;
Congradulations on your "Big Day" Rose! ! !
Wish you both the BEST! ! !
RobertO
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Congratulations Girlie ! :2thumbsup; :2thumbsup;
So good to see so much celebrating happening at once, you all deserve it !
Lots of love Tamara :yahoo; :yahoo; :yahoo; xxx ooo xxx :yahoo; :yahoo; :yahoo;
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Allright Girlfriend, dont you think that now that you've got that purty new kidney that your gonna quit coming and chatting and posting here with us, OH HECK NO, you'll have to deal with me coming down there and giving you a :boxing; and a :boxing; and then a great big ol' Goofynina hug ;) :cuddle; I love ya girl, looking forward to hearing about your transplant journey... :2thumbsup;
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THAT'S AWESOME! Tell Amanda Mark wishes her the best with lots of hugs and kisses. I can't wait to chat with her!!!!!
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Amanda is doing fine but still struggling as the Kidney isn't working 100% yet.. They found when they did a transplant that she had a bladder infection so is on a range of drugs.. She is still very down and in pain.. Hopfully she will feel better soon.. The doctors are hoping the Kidney will start to work soon so please please keep the prayers coming...
Also I can now officially say I'm a married woman and can I tell you how hard yesterday was for me to go through this journey without my sister there.. As happy as I was to be married and for Amanda to get a chance at life was still so hard for me.. I had an emptiness all day.. I wasn't going to go through the day without seeing my sister so after the church Diego and I showed up for her to see us she was SO happy to see us and all I could do was cry..Hopfully she is home soon so we can keep our fights going.
Thank you everyone for your support and please keep us in your prayers xo
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Oh Rose, This post made me cry. You love each other so much. It is so nice to hear.
Congratulations to you and Diego. And congratulations to our Amanda.
xoxo
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Tears here too - Rose - so happy for you and I know it must have been a difficult day - who could have ever imagined 2 such important events happening so close together? I pray Amanda improves and wish you all the very best!
LOVE!!!! :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
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Your so sweet Rose and a great sister... i'm praying for Amanda to hurry a nd feel better soon and kidney to be working better soon. :grouphug;
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:grouphug; Tears here too.
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You both are in my thoughts and prayers too. Congratulations to you both!!!!!!!!!!!
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You are both strong loving women, :grouphug; Everything will work out well.
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:grouphug;
Congratulations on your wedding. You and Amanda are in my prayers.
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Am leaving today for my Honeymoon so thought I would give you an updated before I go. Doctors have found out that the organ donor more thank likely was carrying a virus and believe its Hep C, if this is the case it would have been contracted to Amanda. A liver Doctor and Hep doctors will go in today.
Amanda is very angry at the moment and wishes she didn't take the Kidney.
We wont know for sure for another 6-8 weeks if she has contracted this they will then let us know where we stand and what options we have as a renal transplant patient with Hep..
I will post more when I get to New York and let you know more. Thank you for all your well wishes I read all your Messages to Amanda this morning and she was so happy to hear them all.
xo
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Hey Rose Thanks for that , I know she was in alot of pain when i spoke to her and very angry, thinking of her, Hope you can have a great honeymoon and not worry to much.Have fun :cuddle;
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Rose - I hope you have a great honeymoon and can relax after all the emotions the past few days.
I have heard of this happening before - 2 recipients received kidneys and it was later determined that the donor had HEP C. One recipient opted to have the kidney removed and went back on the list, the other recipient kept the kidney and had not gotten HEP C a year later. I will try to find the article. Please give Amanda my love.
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:grouphug; :grouphug; :grouphug; For you both but especially Amanda. Thinking of you.
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:grouphug;
Keeping you both in my prayers.
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Rose - I PM'd my phone number - if you can, please call when you get to LA and I will come meet you!
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Am leaving today for my Honeymoon so thought I would give you an updated before I go. Doctors have found out that the organ donor more thank likely was carrying a virus and believe its Hep C, if this is the case it would have been contracted to Amanda. A liver Doctor and Hep doctors will go in today.
Amanda is very angry at the moment and wishes she didn't take the Kidney.
We wont know for sure for another 6-8 weeks if she has contracted this they will then let us know where we stand and what options we have as a renal transplant patient with Hep..
I will post more when I get to New York and let you know more. Thank you for all your well wishes I read all your Messages to Amanda this morning and she was so happy to hear them all.
xo
I'm sorry but this makes me very angry. The donor spent something like 7 weeks in the hospital on life support and they didn't know she was carrying hepatitis C until after they transplanted her kidney? I hope Amanda will be well and that you enjoy your honeymoon in America. Please keep us updated on Amanda's progress.
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I'm with Livecam on this one. Very angry. >:( Please send our Love and well wishes.
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I will keep Amanda in my prayers and Rose enjoy your honeymoon! :grouphug; As far as the Hep C, I'm confused...don't they check for that when they screen the donor? or the kidney?
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They should have checked the kidney for disease. Someone dropped the ball or was incompetent in the manner.
Best wishes to Amanda and I hope there are no problems as a result of this mishap by the doctors.
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How in the world does this happen? During my run (exercise not dialysis) tonight all I thought about was how I hope Amanda can somehow be fortunate enough not to be affected by this. I too am angry about this news. I remember when I was hospitalized for my kidneys failing, I punched a nurse (or somebody) and they hadn't even done anything wrong, I can't even think about what I want to do to the person responsible for this.
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Wow, missed this thread, I am so happy and worried too. Prayers are beling sent your way! Enjoy your honeymoon and picture her happy and healthy! Your mental health is important to healing.
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Are they going to keep the kidney in? If so, will it work? Take it out? If they took it out would she have a better chance and not getting the Hep C or is it too late and she will get it no matter what know? I wanna come over and say some words to that transplant team... if only it was closer.... we all shall be thinking of you Amanda. :grouphug;
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wow-this makes me sad....I'm glad you got a kidney- but gee- not glad about the Hep C, I will be thinking of you, those Doctors need a slap, what were they thinking ( or not thinking) - hope your doing okay anyway, :grouphug;
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Amanda, I so hope it works out well for you. You've had such a rough time of it lately, darn it! Rose, enjoy your honeymoon, Amanda would be the first one to say so! You have our prayers here, both on the forum, and others outside it. Hang tough, ladies. It WILL get better. :grouphug; :grouphug;
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Wow, seems like if the donor was hospitalized all that time they would
have known about that. I'm shocked that would happen. I pray it all turns out well.
Have a great honeymoon Rose. Wishing you all life's best.
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i had seen this threat earlier and knew that amanda had gotten a transplant, however just got around to reading the entire thing. aaaaaaarrrrrrrggggg!! bummer, when it rains it pours. i hope everything works itself out somehow. you both will be in my prayers
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Amanda Dahling ;) Just wanted to let you know i am thinking of you and I am sending good thoughts your way. The chatroom is lonely without you girl, just wanted you to know that you are being missed (as if you didnt know) :P ;) I love you my friend, Godspeed :cuddle;
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Amanda, who's butt can I kick :boxing; :boxing; hoping better times ahead. Love ya Hun :cuddle;
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Been away from the computer most of the weekend and just saw this. I am so sorry/angry/sad/disappointed for Amanda that this happened. I just don't know what else to say. I'm shocked that this could happen.
Rose, enjoy your honeymoon.
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This is shocking news... my fingers are crossed that things will turn out OK for Amanda whatever she choses... what a horrible thing after the joy at getting a kidney that is such a good match...
all our thoughts are with her!
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Hey Amanda and Rose.....you two are two peas in a pod which is just what you need right now Amanda Wow Darling, I am so sorry you are going through this.....I don't blame you for being so upset. Let me know when I can come and visit. Lots of love, Cindy.
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Still thinking of you Amanda, hoping you get things worked out and start to feel much better! :cuddle;
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If I could I would come up and visit too... my thoughts and prayers are with Amanda, Rose and their entire family...
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Hello to you all..... (the hospital is in major KISSING BUTT mode.... so i have internet for a little while)
wow what a long week...... i want to start off by saying that i love you all....... and i could never forget nor leave this site! Kidney or no kidney!
I am not feeling very welll so i have to keep this short.
Well there is so much to tell of the story i will try to post it all tomorrow. All i can say is that my donor was just about an identiy twim match.... they have never seen such a close match im NSW before. My doctors who we know on a personal level was in tears when he met me in the E.R. I will go into details another time i just don;t feel that well tonight. But i must say i feel blessed to know u all and that i have such awonderufl friend and family with me. When i went it for my transplant i had 60 guest waiting for my in the hospital. It was good knowing i had everyone on my side.
Ok well here is my quick update. My new kidney which i've approaitely named "sleepy" Is still not awake and is still adapting to its new home in me. None the less we are sure it will come around soon and starting working. I had a biopsy today for further investigation and the news was also good, "sleepy" needs more time to recover from its journey. But i'm sure it will come around when it feels its ready.
As many of you know this week has been such a high and low, and has honestly been the hardest week of my life. But i've decided 2 deal with one thing at a time. Thank you for all my well wishes and good thoughts. You are such an amazing bunch of people, it was much easier going through this knowing i had you guys on my side.
As you know already my donor might have had a "virus" doctors are flying in from perth to give me my results tomorrow. Please keep ur fingers cross for good results.
Tonight i ask you to pray for my donor family, and 4 "sleepy" to WAKE UP.
I love you all.
Amanda
xxoo
ps. sorry if none of this makes sense, i am kinda on a low tonight and not feeling myself.
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Hey there girl,
Hang in there, as the ol aussie sayin she'll be right mate, with all the prayers goin your way , "sleepy" will be a lil busybee kidney in no time.
Thinkin of Ya Heaps (and sleepy lol )
Lots of Love Tamara xxx ooo
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:cuddle; Amanda
Stay strong. We are all thinking of you and wishing for a positive outcome. A 6/6 match is amazing. :bow;
I am sure "Sleepy" will wake up soon and have you up and running around. I will cross my fingers and toes!
Thinking of you all the time. ( Your ears must be burning! :) )
Love Sally xxxx :cuddle;
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:)
Hi Amanda, Nice to hear from you and sleepy. You had a lot of guests with you in person and alot more with you in spirit.
You are in everyone's prayers.
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Amanda, it's great to hear from you! I will keep you and "Sleepy" in my thoughts and prayers. Once Sleepy wakes up, she's bound to have a great life with you!
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Amanda baby,
Glad you could drop a note here, we are all pulling for you!
Hang in there and stay strong!
Love you! :cuddle;
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Hang in the hot stuff! XOXOXO!!
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Dear Amanda,
So glad I read your post from you...
I have made a nice BIG coffee to give to sleepy.... drink it all down and wake that lazy bugger up. It's nice to have a nap in between stops but now there's work to be done digger!!! So start doing ya job so Amanda can get on with LIFE!!
Fingers totally crossed for your results tomorrow.... I'll be on the machine directing my thoughts Sydneyway...
*hugs*
*gives coffee to sleepy and prepares another...*
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SLEEPY WAKE UP!!!!!! Hang in there Mans we all love you and wish you nothing but the best :cuddle; :cuddle; :beer1;
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Sleepy, I love it!
Amanda, I hope things improve for you soon. We all have such high hopes for a transplant so we can get on with living, I'm sure it's frustrating to be stuck like this for now. All our thoughts and prayers are with you. Keep us informed of your and sleepy's progress.
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Awwwww my friend, it is soooo great hearing from YOU, and what is this? Aye yi yi Amanda, out of all the dwarfs to choose from you chose SLEEPY? I would've even settled for Grumpy or Doc, lol, :rofl; But all kidding aside, just wanted you to know you got ol' Goofynina and everyone else pretty worried about'cha so please keep in touch with us and let us know whats going on whenever you can. I (we) love you beautiful friend, take care and Godspeed :cuddle;
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Amanda, You are strong and brave. We are all so proud of you. Sleepy needs a little time to adjust and then he will be ready to go.
Hang in there. xoxo
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Hope sleepy wakes up soon. Come out :boxing; Amanda. Take care. :cuddle;
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Hello to you all..... (the hospital is in major KISSING BUTT mode.... so i have internet for a little while)
wow what a long week...... i want to start off by saying that i love you all....... and i could never forget nor leave this site! Kidney or no kidney!
I am not feeling very welll so i have to keep this short.
Well there is so much to tell of the story i will try to post it all tomorrow. All i can say is that my donor was just about an identiy twim match.... they have never seen such a close match im NSW before. My doctors who we know on a personal level was in tears when he met me in the E.R. I will go into details another time i just don;t feel that well tonight. But i must say i feel blessed to know u all and that i have such awonderufl friend and family with me. When i went it for my transplant i had 60 guest waiting for my in the hospital. It was good knowing i had everyone on my side.
Ok well here is my quick update. My new kidney which i've approaitely named "sleepy" Is still not awake and is still adapting to its new home in me. None the less we are sure it will come around soon and starting working. I had a biopsy today for further investigation and the news was also good, "sleepy" needs more time to recover from its journey. But i'm sure it will come around when it feels its ready.
As many of you know this week has been such a high and low, and has honestly been the hardest week of my life. But i've decided 2 deal with one thing at a time. Thank you for all my well wishes and good thoughts. You are such an amazing bunch of people, it was much easier going through this knowing i had you guys on my side.
As you know already my donor might have had a "virus" doctors are flying in from perth to give me my results tomorrow. Please keep ur fingers cross for good results.
Tonight i ask you to pray for my donor family, and 4 "sleepy" to WAKE UP.
I love you all.
Amanda
xxoo
ps. sorry if none of this makes sense, i am kinda on a low tonight and not feeling myself.
Amanda dear, i'm so happy for you :bandance; and i'm keeping my fingers crossed for sleepy to wake up... keep on keeping on girl and come to chat when you feel better i miss you so, especially the fights...hehehe take care girl.
Rolando :cuddle;
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COMON SLEEPY WAKE UP!!! Amanda, you, your family & the donors family have been and will continue to be in prayer here. Get well soon! :thumbup;
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When the going gets tough the tough get going. my Dad used to tell me this when ever i was low. We truly love you Amanda, hang in there we are prayin and stayin at your side. :thumbup;
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Good luck Amanda, I am thinking of you and praying for you. Sleepy will wake up soon, and then it will be offended you chose the name sleepy cause it will be working so hard. ;)
Love you, Angela :grouphug; :cuddle;
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Amanda, you're in my prayers and I hope sleepy wakes up! :grouphug;
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good to hear from you amanda. we'll keep praying for your recovery. and look forward to you being back online full time.
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I'm onto the 5th pot of coffee now... my arms are getting tired from pouring... I think I need to get a nurse to hook up an IV to Sleepy for me :D
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Thank you so much for posting. I was wondering how you were.
I pray the virus is not Hep C and is something they can get rid of quickly, and that "Sleepy" ( :lol; ) is well rested and ready to go to work very soon. :grouphug;
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Lovely Amanda, We have all been so worried and reading your post helped. I am so sorry this has been a rough road. We all want you to be better and for "Sleepy" to wake up and do his job. Lots of prayers for good test results and for a course of action to take care of the virus. Everyone here sends so much love and best wishes. Your sister loves you so much- what a lovely team you two are. Good thoughts and lots of prayers!
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We are really glad to hear from you. And our caring thoughts and prayers are always with you. We are all rooting for you and 'sleepy'. Just keep on keeping on. Lots of love is being sent your way. :grouphug;
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I would call it "Wakey wakey"! Anyway have a great recovery and I hope you feel better soon.
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Hi All from New York!
Well I'm just about ready to go home after the news we have had. Apparently Amanda has contracted Hep c from the donor and it has been a huge stuff up on the Dr's front. The health department is now investigating into this.
They are saying the Hep C is dormant but if it wakes and starts to attack the Kidney they Will have to take the Kidney out we are in utter shock and sadness. Can everyone please source further information on this and find out what chances we have and what options your doctors say? I think there may be different medical procedures everywhere. I'm going to try and do some investigating while in New YORK i LEAVE for Vegas on Saturday!!
Please let me know and please continue your prayers cause god knows we need them right now!
Thank you to all of you Rose xoxo
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Dear Rose,
I am so sorry to read this news. Your whole family must be devistated.. and specially you haviing left must be worried sick for Amanda and wish you could be there - even though there's not much you could do anyway. I am sure Amanda wants you to have as good a time as possible over there.
That is really awful news if the kidney may have to be removed because of the Hep C. All my prayers are that the sucker does nothing.... perhaps it is learning from sleepy and will STAY asleep even once the kidney has woken and got on with things.
My thoughts are with you both and your family
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Dear Rose,
Thank you for letting us know.
I am so upset about this. I hope they figure out how this could happen so it will never happen again.
In the meantime our dear little Amanda will hopefully get some guidance about how to proceed.
I send prayers and am thinking about you both all the time.
:grouphug;
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By now the screening should catch Hep C. There is no excuse for this. We want a kidney, but not a bad one. I hope Amanda doesn't end up paying for this with the rest of her life.
My prayers are with her and you.
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OMG :banghead; WTF this is so upsetting Mans I'm so sorry for you hun :cuddle; life seems so unfair. Stay strong and remember IHD naughty girls got your back girlfriend so let your Docs know I'm on the way :boxing; :boxing; You and your family are in my prayers
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thinking of you and your family...words fail me, just know your in my thoughts. :grouphug;
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I can't believe they did this to Amanda. I hope there is good lawsuits available in Australia, this is unbelievable that this has happened. :banghead;
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OMG I can't believe that it wasn't picked up in screening. Hope you sue those docs and the health care system.. :boxing; Should never have happened. Somebody really f#$%ed up!!!
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I just don't know what to say here.. so I guess that's what Icons are for. >:( >:( >:(
Amanda I hope the Hep C stays dormant forever, if there was anything I could do I would be doing it. Love ya just the same and stay positive and everything has it's way of working out.
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Rose and Amanda, My thoughts are prayers are with you! :grouphug;
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Sorry to hear the A. What the hell goes? My thought's are defiantly with you and have been all week. I was telling everyone about my little friend Amanda from Aussie land at camp this past weekend. By the way my daughters and Nevada wish you best of luck. Take care my friend..... Your IHD Mom.
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Hello to you....
Sorry i have not been on line for the last few days, it has been a huge struggle, which unfortunately i feel i am just at the beginning of. I want to first start off to say thank you for everyones thoughts and prayers, you are all so special people, that a hold dear to me.
First on note of my kidney... I had to dialyse today, so coincidently Ive decided to name the kidney "it".
Well where do i start? Wednesday was .............to simple put it a nightmare.... (you know something is terrible wrong when 15 doctors come into your room to "chat"). They came into my room and told me that they did a specific test on my blood which cost thousands of dollars, which they usually don't do on many people because of cost.. And well it came back positive.. i could honestly feel my heart throbbing against your my chest.... you know that feeling where you had the WORST nightmare and u wake up to the relief it was just a dream.... thats how I've felt since there. I feel physically and mentally sick over it.
Your probably wondering what happend after they broke the news? Things did not go well as u can imagine... there was pretty dramatic scenes at the hospital....... after 1 hour of yelling with transplant co-ordinates and red cross.... I told them to go and page the two doctors (names which i won't mention) that i spoke to in the E.R that night, which i believe where half to blame for this situation along with the red cross.. Both of those doctors i was told were Emotionally upset over this and had cancelled there appointments. But i new they were hiding somewhere int the hospital.... I insisting at the test that they had 2 minutes to get them to my room, they told me they didn't know where they were (which was i lie) so i decided to through there papers on the floor and break such a pretty vase they had on there nurse station. (which did make me feel a bit better).
One of the doctors eventually came up, and he sat down and faced the firing squad..... he was physically upset and looked like he lost 5 kilos in two days...... and admitted to his mistake on his behalf...
Since then everything had been havic..... they have called in the best specialist from around Australia to help this situation. They have all admitted error has been done, and that this should of never ever of happend..... for legal reasons i can;t for into the other details, but to me none of this makes anything better... no amount of compensation of money can give you back your health.
I can not start to explain how sick to the gut i feel 24/7. This has been the worst week of my life... can u believe i don;t want to think back to last Thursday when i was happy at home on dialysis?? .... yep thats how bad i feel. I kicked my butt to try to stay healthy, i did more dialysis then most people and i have sacrificed so much in my life, to be safe, healthy and stay clear of nasty bugs..... but all of this was for nothing.
I;m so sorry this was not a more up beat message but i find it hard to see a light at the end of the tunnel, and don;t know how this can get better... I want this terrible feeling inside me to leave, but i don't see how it ever will Today I'm 8 days from transplant and Ive lost 7 kilos, even while taking prednisone so that should show u how this is affecting me.
Please pray for me tonight that i am strong enough physically and mentally to get through this.
I;m always thinking of you all.
Stay well.
Love
Amanda
xx00
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Sorry, I kind of lost track of thread for a few days! Amanda--I'm SOOOO sorry about what you're going through! You have every right to not be upbeat in your posts. You are dealing with so much. You need to concentrate on you, and not try to please us! ;) You are in my prayers.
And Rose--
i LEAVE for Vegas on Saturday!!
You'll love it! My husband and I went there for our honeymoon a few months ago. If you can, take a short side trip to see the Grand Canyon SkyWalk. It's awesome!
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I'm so sorry Amanda that all this has happened and I wish I
knew the words to say. Will keep praying for you and family.
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Oh Amanda I'm soooo sorry and mad to hear this!!! I hope you sue the heck outta them!! >:( You deserve so much better and I hope the Hep C stays dormant. I'm keeping you in my prayers.
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Amanda, I'm so sorry this happened to you. I'm not sure what to say, but just know that I am praying for you and I hope things get better :cuddle;
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Manda May,
I know you did everything to stay healthy and I am sick about this too. I know all of us are stunned and saddened that you have to experience this. On top of all that is the freekin kidney isn't even working!
What is the next step? What do they plan to do? I am praying and think about you all the time. It's a good thing I'm not closer because I am afraid I would do a lot worse than breaking a vase. This whole situation makes me so angry. Thank God you have a supportive family and you have us too. If there's anything you need, I will try to get it. Take care baby girl!
:grouphug;
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Amanda...you are very very strong. What has happened is indescribable. An author couldn't dream up your story in a hundred years of trying. We are here for you in every way we can be. I know that there is nothing that can compensate for what has been done. I hope that at some point you decide to tell your story publicly, not here on IHD but in a wider way so that the world knows what happened here. The story needs to be told so that creeps like the ones involved here are stopped from hurting other innocent patients like yourself.
Be strong, let yourself heal, and get yourself away from the people that hurt you. Don't ever trust these people again. There must be better teams than these in Oz and you deserve the best.
God bless you and I hope that you will be home and talking to us soon.
Jeff
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Oh Amanda. What you must be feeling now. No, no legal action taken can bring back your health. What a horrible shock to have to face. As others have said, we are here for you. Definitely demand another tream, if not another hospital. :grouphug; :grouphug;
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I am at a loss for words... I am hoping the best for you. :grouphug; :grouphug; :grouphug;
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Dear Amanda, we are all praying so hard for you. No one deserves to have to deal with this. Wish we were all closer, but my thoughts and prayers are with you and your family. Everyone here loves you :cuddle;
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Oh dear Amanda,
You will get through this. You are strong and you are brave. You have proved that through all that you have been through. Get well, keep healing and we will all kick some ass when you get better. You have a lot of love and support, and that is one of the greatest things we can hope for. Hang in there honey. We love you.
D'Anne
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Miss Manda Pie,
Your strength has been my motivation since I heard of what has been happening. I started running a few weeks ago in an attempt to be as healthy as possible for the time when a new kidney becomes available for me. You are all I think about when I am running and when it gets really difficult half way up the hill at the end of my run, I press on and tough it out because I know the pain that I feel is of no comparison to what you have endured. I am at such a loss for words and my emotions are all over the place about your situation, angry, confused, scared, faithless, heartbroken. I almost feel like I am doing an injustice posting this right now but I really want you to know that I am also thinking of you and those you love just as many others from the IHD family. I will continue to keep you in my thoughts and dedicate every kilometer that passes to your well being and that of your loved ones. You are an inspiration to me. With love and compassion and great big Grizzly Adams hugs, XOXOXO - George
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What the &%#$? >:( Who the @*%! is in charge? >:( Dont even let me go and &#!@#&^ go and kick some *#!^$^# ass >:( (now where are my &%@*%# blood pressure pills) >:( Hang in there girl, you WILL get better soon ok, keep that beautiful chin up, we love ya :grouphug;
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Amanda,
I'm sending you big hugs and all the good vibes I can from Seattle!
I had a similar malpractice issue this summer when the doc who put in my PD catheter severed my ureter at the same time. Luckily the damage wasn't permanent, but really...I could have died! I am so glad that you are sticking up for yourself and calling this doctor out on his negligence. I'm doing the same thing even though my situation isn't nearly as dire as yours. Best of luck to you, girl! I'm so sorry that this happened and I hope this "doctor" (using the term lightly) gets his just desserts!
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I still wonder how this wasn't found out beforehand.
I wonder if someone else got the donor's other kidney as well.
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I still wonder how this wasn't found out beforehand.
I wonder if someone else got the donor's other kidney as well.
I was wondering the same thing. And what about other organs?
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how many people were affected, its so sad :'(
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Prayers for you Amanda, coming your way with love and hope and faith.
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Sorry for all your troubles Amanda...Hoping and praying this will work out. :cuddle;
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I'm sorry I missed this thread (been in hospital most of this week, but that seems soooo insignificant as to not require mentioning).
Amanda, I admire your strength, particularly in standing up to demand those doctors should face you. That may not make you feel much better, but I really do admire you.
I can't add anything else that hasn't already been said, except to say that you will not leave my thoughts any time soon. Keep fighting hun.
(Rose, I hope your holiday goes as well as possible, look forward to your return).
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I got "the call" last night, but they told me that the person had Hep B as well as a history of high blood pressure. I had been told to not accept a marginal donation at this time, as I am healthy otherwise, and do not need someone elses health problems. Thanks to reading this thread, it made it easier to turn down. At least I was warned, I am so sorry Amanda was not. Pray she is doing better.
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Oh, Amanda, I am so very sorry and I cannot imagine what you are feeling. Thank you so much for posting and letting us know what is going on. I hope "it" wakes up soon - at least if you get a well working kidney out of the deal it wouldn't be as horrible.
I would love to have seen the looks on the faces when that vase went flying.
Hang in there - my thoughts and prayers are with you.
BTW, give another thought to the one doc that had the integrity and guts to face you. Is it possible that he may eventually become a good force in your life trying to make up for his mistake? He ought to do everything in his power to make this work out in the best way possible. Can he petition to get you moved to the top of the list and get a new kidney? Could he get you the latest treatment for Hep C? Maybe make him pay for the publishing of your book on dialysis and transplant and your miraculous recovery from this horrible mistake?
Please post when you can.
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Amanda - this sucks in the hugest way possible. I think about you constantly, and you know how much we all love you. :grouphug; :grouphug; :grouphug;
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Amanda, so sorry my God it sounds so surreal but I know it is a real nightmare. My prayers are with you...Boxman
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BTW, give another thought to the one doc that had the integrity and guts to face you. Is it possible that he may eventually become a good force in your life trying to make up for his mistake? He ought to do everything in his power to make this work out in the best way possible. Can he petition to get you moved to the top of the list and get a new kidney? Could he get you the latest treatment for Hep C? Maybe make him pay for the publishing of your book on dialysis and transplant and your miraculous recovery from this horrible mistake?
Black has made some good points here, which hadn't occurred to me. When you feel up to it, Amanda, perhaps consider some of these things, or any other advantages this doctor may be able to bring.
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My heart hurts for Amanda. I had seen the post last week where she'd received the call but I hadn't had a chance to offer my congratulations. Then I see today how all has gone to hell in a handbasket. Reading through the various posts, I had a first thought maybe I'd get to offer encouragement because my 2nd transplant was also a "sleeper". I too had to dialyze after receiving my transplant (which had been soooo discouraging at the time) but I was lucky and the doctors were able to give me some sort of medication that "jump-started" my transplant. It came to life and I enjoyed 16 wonderful years before losing it to complications from parathyroid surgery in 2003. But I was never faced with the monumental problems before Amanda today. I can only offer my prayers and good wishes that all will come out well in the future. Amanda, you are a strong and lovely person with a wonderful support system of family and friends around you. All are praying for the best for you and I hope you continue to have faith that all will work out for the best for you. I will continue to keep you and your family in my thoughts and prayers.
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I got "the call" last night, but they told me that the person had Hep B as well as a history of high blood pressure. I had been told to not accept a marginal donation at this time, as I am healthy otherwise, and do not need someone elses health problems. Thanks to reading this thread, it made it easier to turn down. At least I was warned, I am so sorry Amanda was not. Pray she is doing better.
ARE THEY SERIOUS!!! Am I just totally paranoid about this whole transplant deal.....is anyone else appalled at the type of kidney that would even be offered to someone? Is this, and the trash that was put into Amanda, what the medical community means by "expanded criteria"? Why on earth would you offer a marginal kidney to someone, whether thay are doing well on dialysis or not? If they're doing well, the reasons why not are obvious. If they're doing poorly, why would you compromise them further with a new disease process or a kidney that has has been damaged by HBP? How could benefit outweight risk in either case? Is this a money scam......surgery being performed with a less than optimum outcome likely. What the hell is happening?
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ARE THEY SERIOUS!!! Am I just totally paranoid about this whole transplant deal.....is anyone else appalled at the type of kidney that would even be offered to someone? Is this, and the trash that was put into Amanda, what the medical community means by "expanded criteria"? Why on earth would you offer a marginal kidney to someone, whether they are doing well on dialysis or not? If they're doing well, the reasons why not are obvious. If they're doing poorly, why would you compromise them further with a new disease process or a kidney that has has been damaged by HBP? How could benefit outweight risk in either case? Is this a money scam......surgery being performed with a less than optimum outcome likely. What the hell is happening?
It's offered because there is people out there who are older (and/or have other health probs and could use any type of kidney for awhile.) and don't have many years left and a kidney like that would do them some good with the years they have left just so they could be off dialysis. These types of kidneys are not offered to people unless they are accepting the "extended criteria/protocol" type of kidneys....which in her case, since she is being offered them, that means she has signed a paper saying she is willing to accept offers for them.. not sure why she is even accepting offers of those types.. her transplant coordinator is responsible for turning those down when UNOS calls them, unless she has signed the paper saying she is accepting them. You have to sign a paper saying you will accept offers of them to be offered them.. so don't go blaming the medical community... there offered for people who could use them. :)
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A older friend at church accepted an extended protocol kidney 2 years ago. He was in his early 70's, already had a liver transplant and was more than happy to get any kind of kidney. He has had a marvelous time since surgery. Went on an Alaskan cruise a few months ago and is just very happy to beable to enjoy life. He knew it wasn't a perfect kidney, but it gave him a new lease on life. Everyone must make their own choice. No one can force one to take an extended protocol organ. I want the best kidney I can get. Maybe when I have been on the list for 10 years or so, I may change my mind and take anything!
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Everyone must make their own choice. No one can force one to take an extended protocol organ. I want the best kidney I can get. Maybe when I have been on the list for 10 years or so, I may change my mind and take anything!
Very correct :) I was just saying, she must of signed a paper saying she would like to be offered them, otherwise they wouldn't of offered it..
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We don't sign any kind of papers here. :ausflag;
So I now have my list of questions ready. Maybe that way I can make an informed choice.
The problem I have with Traci getting offered a Hep B kidney is;
1. She is only 40
2. Has three young children
3.Is doing well on dialysis.
So why would they put her in the position of even thinking of accepting a less than perfect transplant. It is hard enough waiting for that call to come ,I don't want them ringing me with the offer of a dodgy organ. The team should realise it is not a good choice for that patient.
:rant; :boxing;
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I agree, it was a wasted phone call to offer Traci the kidney, especially when time is so crucial when it comes to the cold ischemic period allowed. But I don't think there is any standard procedure, and it just depends on who is making the call. I guess maybe if it wasn't offered, and Traci HAD wanted it, the team may have let her down. Not sure it makes sense anyway. In Amandas case, the kidney was questionable, in my opinion, and should not have been offered to someone so young.
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Angela, you are absolutely right. He did have to sign ahead of time to agree to accept a less than perfect kidney. I really thought all centers talked to their patients about this, but maybe only to older, less healthy patients. With Amanda, it is so hard to understand how this has happened. The system failed her. It shouldn't have happened. I think we are all still stunned and quite emotional about her situation. We are all here for you Amanda and send you much love. :grouphug;
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I agree paris... I am so angry as to how this could of happened to Amanda... it seems like there were so interested in giving this kidney to her just because of the perfect match bs, they didn't take all the necessary steps in testing. >:(
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I am stunned and angry too. Can't stop thinking about it.
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We are all behind you Amanda with all the love and strength we can muster. You have been in my thoughts since I found out. I told my fave dialysis nurse about your sistuation and she was lost for words and angry as well. We are all angry. We all want "it" to get going BUT to keep it's nasty surprises to itself!!!
Sending many vibes up Sydney way.....
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I'm so sorry Amanda that all this has happened and I wish I
knew the words to say. Will keep praying for you and family.
My sentiments exactly.
Amanda... Hang in there, we're all pulling for you and "IT" excuse my French but WAKE THE F*** UP already!!!!! Get to work!
oh, and I'm PRAYING(feel the earth shake?) that if you do have hep c that it will stay dormant. I have had hep c for 22 years so if you need to know something let me know. Sending virtual FEEL BETTER HUGS your way. :grouphug;
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We don't sign any kind of papers here. :ausflag;
So I now have my list of questions ready. Maybe that way I can make an informed choice.
The problem I have with Traci getting offered a Hep B kidney is;
1. She is only 40
2. Has three young children
3.Is doing well on dialysis.
So why would they put her in the position of even thinking of accepting a less than perfect transplant. It is hard enough waiting for that call to come ,I don't want them ringing me with the offer of a dodgy organ. The team should realise it is not a good choice for that patient.
:rant; :boxing;
It is offered (at least in the USA) to ANYONE who is excepting them as offers... like I said.. you have to sign a paper saying you do not want to be considered for it... However, her doctor plays a role in this also... if he thinks she should not be getting anything but a very healthy kidney... he should communicate that to the transplant coordinator... however again... the doctor is the one who also says ok call this person and offer it.. so if he didn't want her to have it.. why didn't he stop them from calling to begin with?
So if they don't ask you to sign papers about it Wattle... I would communicate that to your doctor and your coordinator that your not even wanting to be offered extended protocol kidneys.... at least they will know...
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I just got back from my nephro's office. He talked to me about visiting a few of the local transplant centers (a whole 2) that do both kidney and pancreas. All that kept running through my head was Amanda and Traci's ordeals. I am now second guessing myself as to whether or not a transplant is a better option for me. I'm actually having nightmares!
Amanda--My prayers are still with you (and my dreams!). :grouphug;
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Sorry your having so many bad thoughts/dreams... why don't ya go read all the good outcome story's? Maybe it'll help :) :cuddle;
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However, her doctor plays a role in this also... if he thinks she should not be getting anything but a very healthy kidney... he should communicate that to the transplant coordinator... however again... the doctor is the one who also says ok call this person and offer it.. so if he didn't want her to have it.. why didn't he stop them from calling to begin with?
There should have been more consideration on the suitability of Amanda's donor. That goes without saying. The 6/6 match became the focus.
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Amanda's situation isn't even close to this one... her kidney that was offered wasn't even considered extended protocol... even though it should of been... and your right, the focus was on the fact of the perfect match... and that's where they f'd up... they did not follow procedures it sounds like to me... and should be sued.
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I just got back from my nephro's office. He talked to me about visiting a few of the local transplant centers (a whole 2) that do both kidney and pancreas. All that kept running through my head was Amanda and Traci's ordeals. I am now second guessing myself as to whether or not a transplant is a better option for me. I'm actually having nightmares!
Amanda--My prayers are still with you (and my dreams!). :grouphug;
Please don't let this scare you. I let horror stories scare me too. The only people I knew before my transplant were on their 2nd transplants. But even they were positive and encouraging. There are new advances all the time. Visit the centers. Ask tons of questions. If you get called and it doesn't feel right, don't do it. Visit both centers get listed for both. Ask to talk with patients that are willing to share their stories. At times I felt like I was being pushed by everyone to do it. One doctor really pressured me. I felt like he was selling me a car. The time table he gave me was shorter and shorter each time I went. But now I know he had my best interest at heart. He's not there anymore, but I owe him a big thank you. After you visit the centers, make your decision. :cuddle;
Love ya Amanda. Hang in there! :grouphug;
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Praying for you Amanda!
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Just lettin you know thinkin of you girlie
Hang in there, recuperate, get tough and then :boxing;
Lots of Love
Tamara xxx ooo
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:grouphug; :grouphug; :grouphug;
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Has anyone talked to Amanda lately? I hate to call her again because I don't know if she's still in the hospital and I also don't want to bug her. But I would love to know how she's doing, thanks.
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Just talked to Amanda She is still in Hospital and doing ok the kidney is still sleeping but the latest biopsy showed rejuvenation, she is on iv antibiotics for infection (not a bad one) but talking to her she sounds really positive, and sends her love to everyone and will be back on here when she gets home hopefully soon.
0
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Just talked to Amanda She is still in Hospital and doing ok the kidney is still sleeping but the latest biopsy showed rejuvenation, she is on iv antibiotics for infection (not a bad one) but talking to her she sounds really positive, and sends her love to everyone and will be back on here when she gets home hopefully soon.
WooHoo!! :yahoo; Can't wait for her humor in the Chatroom..
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Thanks for letting us know. She is constantly in our thoughts. My family even asks about her everyday. We will keep praying for her improvement and for "sleepy" to start doing his job.
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Really appreciate the update Charee, thanks.
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Hang in there Amanda. :waving; It's going start working soon.That was a good match. They should be able to treat anything in a place like Australia.
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Thank you Charee, I am glad to hear she's more upbeat. I appreciate the update!
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Ditto ! :grouphug;
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I am new here, but just wanted to say that Amanda is in my hopes and prayers.
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Thanks Charee for the update - good to hear.
You can tell that bloody kidney is from an Aussie... it sounds like a bludger!!! Damnit son there's work to be done!!!
:D
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You can tell that bloody kidney is from an Aussie... it sounds like a bludger!!!
It prolly thinks it's a public holiday. :ausflag;
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Amanda, I am so sorry but i was away {mentally} for awhile. I am sorry for all of this mess. I hope you feel better soon.
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Oh Cycobully!!! I got it... It's an aussie builder.. I mean you know how many days off those blokes take!!!!
I think today must be a "Family Picnic Day"....
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:grouphug;
Thinking of you Amanda.
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Mans miss you in chat!!!! :cuddle; :beer1; Maybe we can wake up sleepy in the chat room :bandance;
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Keep up the good work Amanda! ;D And fight hard! :boxing;
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Some good news for a change! Keep fighting Amanda. We are rooting for you! :cuddle;
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i'm just speechless!!!! (for me that's saying a lot.) hang in there amanda.
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I just LOVED that she broke the vase! I would be so on fire mad that I would have broke a lot more.
Amanda there is nothing you can do about it now except get some compensation and live well. None of us want this to happen so make an example. They won't be so sloppy on testsing again.
You are in my prayers!
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Hey Girlfriend, hope your doing better and better each and every day, wanted you to know that I (we) miss you and look forward to the day when you come back and chat with us all again.....psssssssst :secret; Did i tell you the Rimbo Brothers are here? yep, now we got 2 of them :2thumbsup; :bandance; :bandance; So hurry up and get better K :) ;) Love ya :cuddle;
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Oh Cycobully!!! I got it... It's an aussie builder.. I mean you know how many days off those blokes take!!!!
:D We had our house built just 2 years ago, and in all honesty I have to give them credit, they got it done very very quickly.
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:yahoo; :yahoo; Sleepy is awake :yahoo; don't know anymore will keep you posted
cheers
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What exciting news!! This is what we have been waiting to hear :clap; Thanks Charee for letting us know. :yahoo;
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:beer1; :bandance; :bandance; :bandance; :yahoo; :yahoo; :yahoo;
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Wonderful news. Thanks for the update.
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:clap; hooray for sleepy
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:yahoo; :yahoo;
Keep fighting Amanda! :boxing;
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Thanks again Charee, hoping for the best. :wine;
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Great news!!! :clap; :clap; :clap;
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Yay!!!!!!!!!! :yahoo; :bandance;
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Goooooooooood Morning Sleeeeeeeeeeeeeepy :yahoo;
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:bestwishes; Yeah Sleepy -- time to party!
Love you Manda Pie -- come home soon! :cuddle;
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YAY!!!!!! :wine; :wine; Party time!!!!!
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:yahoo; :yahoo; YIPPEE :yahoo; :yahoo; :clap; :bandance; :2thumbsup;
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Thats great Amanda!!!!!!!!!!!!! Thanks for the news Charee :thumbup;
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WOOHOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! YEEEESSSSSS!!!!!!!
and I just yelled that out loud in happiness at the news... and woke my cat who looks unimpressed!!
oh wonderful news "it" is no longer sleepy and is getting on with the job!!!
Yeah!!! fantastic!!
Hopefully this is the end of dialysis needles for Amanda for ages!!!
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Yay!!! :bandance; :bandance; :bandance; :bow; :bow; :bow;
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How wonderful it is to come home to such beautiful messages from everyone. Thank you so much.
Well yes I'm Home, which I'm sure is to the delightment of the staff and doctors of 9 East Transplant.
Well where should i start...... from where i let off last time, my kidney started "waking up" a few days ago, my creat. has been dropping along with most my electrolytes which have now become normal (my creat. still needs to come down a bit, but it is getting the idea and is in the right direction). My kidney itself as you all know could not of been a better match. I am appreciative more than words can express for the kidney and a chance of living a life away from a dialysis machine regardless of my complication that i have received. I have decided to take a different approach to things, and have tried to build the courage to accept the things i can not change and knowledge to know the difference.
In regards to "my complication" i have the best doctors looking after that area, and at the moment it is dormant in my system and with any luck it can stay like that, and if by any chance the situation changes, we will treat it with the best treatment available. I have chosen it is better for me mentally not to focus on it, and focus what is important at this time, which is my new kidney and looking after all areas of it. Before i end this topic, legally the matter has not been dropped yet forgotten, that is all still going ahead, but the first thing is my health and getting it on track.
I have handled most the medication pretty well, i physically have not found any bad side affects from any of my medication, other then some tummy aches and shakey hands, so i won't complain about anything in that area. I still have some slight pain, which is manageable without taking any pain medication. I have already started a bit of exercise and took midgy for a 15 minute walk, which i know does not sound like much, but my poor young body was exhausted after, so I've decided to take the afternoon off just to rest.
Thank you everyone again for being so kind and thinking and praying for me, I have missed you all so much, and i can;t wait to catch up with you all in chat, and in regards to posting i have a lot of catching up to do!!
Hoping you are all well in safe, i think of you all always.
Love
Amanda
xxoo
:grouphug;
PS - I will try to get some photos posted soon post-transplant and of roses wedding, if someone will kindly take some and scan some for me.
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:yahoo; so glad your home and back here I have missed you heaps my 7 hours on the machine goes so slow without a chat to you , hope you continue each day to feel stronger :cuddle;
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Oh Amanda Darling, you just dont know how happy i am that you are home now and that Sleepy It is up and finally doing It's job :2thumbsup;
:secret; Did you see what i wrote about the Rimbo Brothers? 8) 8) lol :bandance; :bandance;
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I have decided to take a different approach to things, and have tried to build the courage to accept the things i can not change and knowledge to know the difference.
Oh Amanda, you are WONDERFUL. You are a brave, intelligent woman and I admire you for taking this approach!
BTW, I think your 15 minute walk sounds like a HUGE achievement straight out of hospital (I still have trouble with 15 minute walks), and don't worry about the shaky hands. They might well continue (mine have) but they don't affect your quality of life.
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Amanda,
I'm so glad you're home and your kidney is finally doing what it's supposed to do. I'm sorry about the rest of it, but I'm so inspired by your attitude toward it. Best of luck with everything, and please keep us informed of how things are going.
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Oh Amanda Darling, you just dont know how happy i am that you are home now and that Sleepy It is up and finally doing It's job :2thumbsup;
:secret; Did you see what i wrote about the Rimbo Brothers? 8) 8) lol :bandance; :bandance;
Susie.... I already noticed that. :)
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Hi Amanda
I am so glad you are home and the kidney is functioning.
You have a wonderful attitude and are an inspiration to us.
Keep on improving and enjoy a dialysis-free life.
Looking forward to those pics.
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Great to hear from you. I don't know what to say. You are one courageous young lady. :grouphug;
Great Attitude!
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Thanks for the update and the good news. I think you have chosen wisely to not dwell on things that cannot be changed. Your wisdom belies your youth. ;D
Hooray for Sleepy!! :yahoo; :2thumbsup; :yahoo;
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Glad to hear it.. :2thumbsup;
Such a great attitude and look on things hun. :grouphug;
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Yipee Yah !
:yahoo;
Great to see your home Amanda, good to see sleepy is doin his thing, can't wait to your ready to paint Sydney RED !
YOU GO GIRL
Love Ya
Tamara xxx ooo :cuddle; :clap; :beer1; :grouphug;
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:waving; Hi Amanda Pie! :waving;
:welcomesign; Welcome Home!!!
We missed you bunches :cuddle;
You have got the right idea -- make the best of what you've got and celebrate the good stuff! :yahoo;
I am dancing with JOY :bandance;
Don't forget who loves YOU! :grouphug;
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:bandance; Yippppeeeeee :yahoo; Woooohoooooo
I am so glad you are home and 'sleepy' decided to finally wake up. :cuddle;
It's all up from here Amanda. You can hit the dance floor running! :bandance; :bandance; ;D
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Good to hear things are working out , see you in chat :thumbup;
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I am very happy for you. maybe sleepy was just taking time off to build strength. So now the sleepy is awake he will live on forever.
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Thank you so much Amanda for sharing where you're at and your attitude in the circumstances is admirable and impressive. I think you are wonderful. I am absolutely stoked you are back home so soon and "it" is working so well for you with things coming back to normal. A 15 minute walk would be wonderful for you so soon.. this is fantastic.. but remember to take it easy, drink lots (damn I'm envious!!) and take care of YOU and don't overdo it so quickly.
I am totally stoked things are working out for you and the way you are approaching it is fantastic...
Looking forward to pictures and more good news!!
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We are all so glad you are home and "sleepy" is doing his job. Your attitude is marvelous and is a great reminder to all of us to appreciate where we are at and live with joy. We will continue those prayers for your strength and recovery. Get rest and take good care of yourself. :grouphug;
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It was great chatting with you last night girlfriend, i knew i missed you, just didnt realize how much i missed you until last night (boy, it was alot) ;) ;) You just keep on getting your self stronger ok, and remember we are here for you always..... Love ya :cuddle;
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Looking forward to pictures and more good news!!
I almost forgot...I like pictures too. hehe :pics; :pics; and more :pics;
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Welcome home!
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Amanda, Just read that you were home, and I'm so very, very happy for you!
love and hugs, kelli :)
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Amanda! I am so glad you're doing so well, that you can take a 15 minute (!) walk!! That's wonderful!!! It was awfully quiet without you!!! :grouphug;
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Amanda - it is so great to hear from you (I bet Midgy was an excited pup too!) You have a great attitude and that will help you so much in the long run. We love you and, of course, wish the best life for you!!! :beer1;
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Glad your home and your kidney is working!! :2thumbsup;
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What about those Rimbo boys? Haha
Welcome home Amanda!!!!!! You have been missed!
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Great to know you are doing well Amanda!! :bandance; :bandance; :clap; :2thumbsup; :yahoo;
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What about those Rimbo boys? Haha
Welcome home Amanda!!!!!! You have been missed!
I knew if i mentioned the Rimbo Bros. miracles would happen, lol, and look she is even out walking her dog, not bad eh? Now, Rimbo Brothers, how do YOU feel about posing for a pic for her :secret; (in a Kilt) :o :oops; nevermind, wrong thread, sorry, (but can ya think about it at least) ;)
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I don't mind seeing the Rimbo boys in kilts. :rofl; :rofl; :rofl;
Take Care Amanda. Still thinking about you! :cuddle;
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:bandance; :bandance; :bandance; :bandance;
Soooooo happy for you and your family!!!!
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Well my creat. is now down to 115. Which they think is great. And because of how great my match was they think its a good idea to get me off most my anti-rejection drugs within 3 months, which will also help my other complication.
Things are still moving forward in the right direction. :)
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Great news Amanda. I knew things would get better. :beer1;
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YEAH!!!! How awesome!!! So happy for you Amanda :clap; :bandance;
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Great news!!! So wonderfully happy for you!!!!!
I'm glad the little aussie battler is back in action !!!
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That is awesome my friend :yahoo; Keep on keepin' on chiquita ;)
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:yahoo;
Glad things are going well Amanda. Still thinking of you. :)
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Is 115 good? Whats that in american blood work on creatnine?
So they don't want you on ANY anti-rejection medications in 3 months?????
I had a perfect match also, and I am on 2 anti-rejection medicines, and don't plan on ever going off them.
I'm interested in hearing this. That would be great if we could be off of them... and still have our perfect match continue to work for a very long time.
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Could the difference in immunosuppressant drugs between two people with perfect match organs be due to the fact that one has lupus and the other not. I thought a perfect match meant no life long anti-rejection meds. Do the immunosuppresive meds keep lupus at bay?
Sorry if this is off topic but someone I know was recently diagnosed with lupus and we were talking medication.
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OH MY GOD! What a dramatic story to come upon. I was wondering what happened to Amanda, but since I don't read this transplant forum (I dont want to get too amped up about it yet!) I had no idea.
Oh, Amanda! If I had read this earlier, i'd have robbed a bank, packed up the NxStage and Wade and I would be there to raise some hell! It sounds like you did a good job though!
You are in my thoughts and prayers - and I have the gut feeling you're going to be alright, you're a fighter! :boxing;
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Could the difference in immunosuppressant drugs between two people with perfect match organs be due to the fact that one has lupus and the other not. I thought a perfect match meant no life long anti-rejection meds. Do the immunosuppresive meds keep lupus at bay?
Sorry if this is off topic but someone I know was recently diagnosed with lupus and we were talking medication.
From what I understand about perfect match transplants is they still need the anti-rejection meds, at least for the first year. I maybe wrong on that... but the only people I know that are completely taken off anti-rejection meds are people who get transplants from identical twins (there never even put on anti-rejection meds)... and I believe perfect match transplants that have been going or over 10+ years... However I am sure each doctor does there own thing and so forth, so it could be different everywhere... Karol.. where's the info on this? :P
As for the anti-rejection meds controlling Lupus, no.. they do not. However, Prednisone plays a major role in helping put Lupus in remission and keeping it there... so in some transplant patients the doctor might want to keep or start Prednisone in a transpant patient with Lupus to keep their Lupus in remission.
In my situation, my Lupus has been in remission since 1999, and I was on Prednisone for the whole 5 years of my first transplant... and I was taken off of it once I went back on dialysis in 2004... since I wasn't on it for the last 3 years, and my PRA was 0%, my surgeon wanted me to stay off of it for this perfect match organ, and so far so good.
Great question George... I am interested in finding out this info as well, because if in the future I could come off of Prograf and Rapamune and still have a great working kidney, I would think t would be a very kewl thing... :)
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Gosh, I'm interested in this subject too. Cyclosporin is ruining my ankle and knee joints and I can't get my life back until this problem goes away! Neph has said that he doesn't want to reduce or remove my cyclosporin until 6 months have passed, so I'm stuck with it for the time being at least. I hope the damage isn't permanent.
Dad and I were apparently as close to a perfect match as you can get, without actually being perfect. But my understanding is that I am expected to be on the anti-rejection drugs for life.
Tell us all about it Amanda :)
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Thanks again for the support everyone. :cuddle;
OK well i just has an appointment with all the doctors, and this is the new plain.
I will be off Pred. in 3 months, then off it. But i will still be on two other anti-rejection drugs but very low doses for the first year, then after that i will only be on one.
Cycobully you said cyclosporin is ruining your ankles and joints, can't they change you to tacurmus (spelling). Thats what they usually change ppl to when they are having problems with cyclo.
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:bandance; :bandance; xoxoxo
EDITED: Fixed smiley error-kitkatz,moderator
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Ah yes, being weened and taken off Prednisone... I get what you were saying now. :thumbup;
So glad you doing better now hun! :grouphug;
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Thanks again for the support everyone. :cuddle;
OK well i just has an appointment with all the doctors, and this is the new plain.
I will be off Pred. in 3 months, then off it. But i will still be on two other anti-rejection drugs but very low doses for the first year, then after that i will only be on one.
Cycobully you said cyclosporin is ruining your ankles and joints, can't they change you to tacurmus (spelling). Thats what they usually change ppl to when they are having problems with cyclo.
Hi Amanda, :cuddle;
What med protocol are you on? What meds do you take for the transplant? :-*
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Amanda, I am so glad it's going much better for you, finally! :beer1;
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Amanda you are remarkable! :bandance;
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Cycobully you said cyclosporin is ruining your ankles and joints, can't they change you to tacurmus (spelling). Thats what they usually change ppl to when they are having problems with cyclo.
Hi Amanda
My neph doesn't want me to change or reduce the cyclo until I've been on it for 6 months, as he feels it would increase the risk of rejection. At the moment, I'm at the 3.5-month mark. I just had an MRI on my ankles (and knees? not sure) yesterday to check the situation out further, so we'll see what he says once he has those results.
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Ok the med protocol i am on is -
prednisone - 15 mg (off it within 3 months)
cellcept- 750 mg
prograf - 4mg ( stopping at 3 months)
My results for today have improved a lot more also. My Creat. is now 90. :bandance;
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wow 90! that's amazing.... mine's like over 1000 lol!
you go girl!!!
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My results for today have improved a lot more also. My Creat. is now 90. :bandance;
:yahoo; :yahoo; Woohoooo Amanda! GO SLEEPY GO :cuddle;
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My results for today have improved a lot more also. My Creat. is now 90. :bandance;
:yahoo; :yahoo; Woohoooo Amanda! GO SLEEPY GO :cuddle;
Yahoo! :yahoo; Now maybe you'll change your kidney's name to Spunky! :bandance;
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I'd vote for Spunky.... I mean Amanda is spunky so that totally fits! :)
shhh don't show her boyfriend that ... or I could be needing more than a kidney!!!!
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LOL!!! Richard, Richard, Richard. :banghead; :banghead; What ARE we gonna do with you. one of these days.....
Actually, though. Spunky is a good name!!! I like it, and Amanda sure is, isn't she? One heck of a strong woman.
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My results for today have improved a lot more also. My Creat. is now 90. :bandance;
I'm confused! I know down there, your creat value is different than here in the US, but what is the normal range? I see yours is down to 90, but RichardMEL's is over 1000, so I'm not sure what to base them on. Oh, and BTW, :clap; on the kidney!!!
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My Creat. is now 90. :bandance;
That's incredible! And fantastic! I've never done better than 100, and I did a dance even then.
Now maybe you'll change your kidney's name to Spunky!
Why not? My mum gave my kidney a name - Sidney. :rofl; Sidney the Kidney.
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I'm confused! I know down there, your creat value is different than here in the US, but what is the normal range? I see yours is down to 90, but RichardMEL's is over 1000, so I'm not sure what to base them on.
The normal range is between 60 - 120.
I *THINK* (and I could have this wrong) that what we call a creatinine reading of 120 is what you would call 1.2 :-\ - can anyone confirm that I've got this correct?
So Amanda's is doing excellently :) - Richard's is extraordinarily high, I didn't even know it could get that high :(
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Ok the med protocol i am on is -
prednisone - 15 mg (off it within 3 months)
cellcept- 750 mg
prograf - 4mg ( stopping at 3 months)
My results for today have improved a lot more also. My Creat. is now 90. :bandance;
Thats great Amanda, glad your kidney is alive and well!!!
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I'm glad everything is going fine! :clap;
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Wonderful news. So happy for you! :clap;
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Ok the med protocol i am on is -
prednisone - 15 mg (off it within 3 months)
cellcept- 750 mg
prograf - 4mg ( stopping at 3 months)
My results for today have improved a lot more also. My Creat. is now 90. :bandance;
Awesome!! :2thumbsup; :clap; :bandance;
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I *THINK* (and I could have this wrong) that what we call a creatinine reading of 120 is what you would call 1.2 :-\ - can anyone confirm that I've got this correct?
120 is not 1.2
here's a clinical unit conversion : http://dwjay.tripod.com/conversion.html
to convert from the large numbers (i.e. 120, 130, ..1200) to the small ones, use (µmol/L) to (mg/dL)
so, 120 would be 1.4
:)
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I *THINK* (and I could have this wrong) that what we call a creatinine reading of 120 is what you would call 1.2 :-\ - can anyone confirm that I've got this correct?
120 is not 1.2
here's a clinical unit conversion : http://dwjay.tripod.com/conversion.html
to convert from the large numbers (i.e. 120, 130, ..1200) to the small ones, use (µmol/L) to (mg/dL)
so, 120 would be 1.4
:)
Thanks for the calculator! That works great!
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Thanks hala. That may help many.
Please go to the introduce yourself section and introduce yourself.
Thank You
Sluff/ Admin
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here's a clinical unit conversion : http://dwjay.tripod.com/conversion.html
Ah, that's fantastic, thank you!
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Thank you for answering my question! :bow;
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Thanks .. i was trying to figure that out also!
:)
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You are doing great Amanda! :2thumbsup;
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;D Hey Amanda, when ya gonna show us your scar??? :pics;
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;D Hey Amanda, when ya gonna show us your scar??? :pics;
:thumbup; :popcorn;
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Yeah come on :pics; please we wanna see sleepy's entrance lol
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Yeah c'mon woman!! strip off and show us how big your.....
..... scar is!
:)
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:secret; Hey Amanda, i heard the Rimbo Bros. wanna see your scar :popcorn; could be just a rumor but i'd post that pic if i were you :popcorn; :popcorn;
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Amanda is going to have her stent removed tomorrow because she has a bad infection and they think that might be the source of it. I will let her know that everyone wants to see her scar, I tried to wake her up saying "let me take a picture of your scar" and she got mad that i woke her up. :rant; >:D :lol;
Here is a picture of Amanda and her new Kidney.
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Amanda you are so photogenic. Hope the infection goes away after the stent is removed. Here's hoping all goes well. :beer1; :grouphug;
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:bestwishes; I hope things get better soon!
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Great picture Amanda. :)
I hope everything goes well and smoothly. :)
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You have a healthy glow about you, so happy for ya :thumbup;
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Awwww Amanda, you DO look *ahem* innocent (too bad we all know better) ;) >:D nah, you look absofreakenlutely beautiful my friend and it has been a pleasure being able to call you my friend :cuddle;
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Gosh, how does she look so fantastic after everything she's been through so recently? *is jealous*
Stent removal is a bit yucky, but it's over with quickly. I hope it helps the infection disappear quickly.
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You look so beautiful Amanda. Hope you feel better soon! :)
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Thanks Everyone. :cuddle; ..... i have not been on line because i have been so tired and weak probably because of my UTI.
I was suppose to get my stent removed today but it has been rescheduled for tomorrow afternoon, i asked to be put asleep because I'm a chicken and would rather not be awake during it. :)
My creat. has stayed steady. And "my complication" is under control. 8)
OK seeing some of you would want to see my wanted but ugly scar, its quite big and goes pretty low :o so i will censor the picture and post it soon.
Sending you all lots of love and hugs.
Amanda
xxoo
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Thanks Everyone. :cuddle; ..... i have not been on line because i have been so tired and weak probably because of my UTI.
I was suppose to get my stent removed today but it has been rescheduled for tomorrow afternoon, i asked to be put asleep because I'm a chicken and would rather not be awake during it. :)
My creat. has stayed steady. And "my complication" is under control. 8)
OK seeing some of you would want to see my wanted but ugly scar, its quite big and goes pretty low :o so i will sensor the picture and post it soon.
Sending you all lots of love and hugs.
Amanda
xxoo
I vote for no censor!! >:D :lol;
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See sluff i was right about you..... you are a "naughty" boy. ;)
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ha ha, I had to censor part of my scar photo too, when I posted it (well, "censored" in the sense that I only pulled my waistband down far enough to see the top half or so of the scar, the rest being too low).
Nobody asked me for "no censor" - I don't know whether to be glad or sad about that. :rofl;
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Goofynina was right, I do want to see the scar. You can send the uncensored pic to my PM or just send it to me on MSN. :clap;
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:lol; I don't think that's fair if only you get to see the uncensored pic :P
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:lol; I don't think that's fair if only you get to see the uncensored pic :P
Speaking of scars Angela.... did we ever see yours??? :popcorn;
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Yes Angela i'll show you mine, if you show us yours! ;D
Goofynina was right, I do want to see the scar. You can send the uncensored pic to my PM or just send it to me on MSN. :clap;
I thought i had already sent you that picture? ;)
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Ops I forgot to update about the stent removal. I had it done under a light sedation and it was not a bad experience at all.
So for anyone getting it done, i would recommend getting it done under sedation, instead of a general anesthetic, its much safer options.
My creat. is still great, but I'm still going into clinic every day for blood work, but I'm hoping to have the weekend off this week. :)
Amanda
xxoo
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Here is my Scar..... If you look carefully they tell me you can see the kidney sticking out slightly on top of my scar....... ;D
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Healed up nicely Amanda ! and hey great "censored shot" ;D
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hey that looks good healed up nicely :2thumbsup;
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Awwww 'Manda, that scar doesnt look bad at all :clap; :secret; I am sure you can still wear your bikini :secret; :2thumbsup;
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:2thumbsup; Very nice scar!
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:2thumbsup; Great looking scar Amanda! That will fade to a thin line. :thumbup;
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Gosh, your scar looks really thin and light in colour compared to mine. Not that I mind, I'm proud of my scar, but the difference is really surprising, especially considering yours is still much fresher than mine!
Thanks for sharing. :)
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??? Amanda, did they use dissolvable stitches? Just wondering about the differences in the scars. :-\
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That doesn't look bad at all Amanda. It will probably get even better in time.
Maybe we need a thread in the transplant section: Show your scar. Maybe we could have a contest. >:D something must be wrong with me. :lol;
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Amanda, that scar is nearly invisible compared to my two! Even my one from five years ago is a quarter of an inch wide! Have things really changed that much in that little amount of time?
BTW, you look great in the pic that Rose posted!
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Thanks everyone. I'm surprised how thin it is also. The surgeons did a clean job. :2thumbsup;
I had staples in for 2 weeks.
Sluff that scar competition sounds like a great idea. ;) ;D
But in all honestly it wouldnt bother me how the scar looked, it would of been well worth it. :)
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Miracles do happen! I will keep you and ur family in my prayers. :yahoo;
EDITED: Fixed italicise error - Sluff/ Admin
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Amanda is just another gorgeous example of Aussie womanhood!!! :)
and yeah great scar.. looking good...
and yeah, I'll have the uncensored piccies too Amanda please ;) ;) ;) hehe
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Great scar Amanda!
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and yeah, I'll have the uncensored piccies too Amanda please ;) ;) ;) hehe
You're too funny Richard. :lol;
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Amanda, you have not told us your experience, what you were doing, where you were at when you got "the call" i love hearing that part of the story. Please tell us how YOU are feeling too, we've seen the scar and stuff but you haven't told us how YOU are feeling. (which i know it must be great) ;) ;) :2thumbsup;
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Amanda, that scar is nearly invisible compared to my two! Even my one from five years ago is a quarter of an inch wide! Have things really changed that much in that little amount of time?
No, it must have something to do with how different surgeons do their work, I suppose. Because my scar is only 4 months old, and mine is also very wide, nothing like Amanda's.
Amanda, you have not told us your experience, what you were doing, where you were at when you got "the call" i love hearing that part of the story. Please tell us how YOU are feeling too, we've seen the scar and stuff but you haven't told us how YOU are feeling. (which i know it must be great) ;) ;) :2thumbsup;
I would love to hear all these details too! :2thumbsup;
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I'm working on writing a long story with all the details at the moment for you all. :)
On another note... I have been having a struggle lately emotionally worrying about the Hepatitis thing. I know I'm not the only one with this virus but the way i got it just makes it that much harder to get over. I am worried about what it means for me now and for my future. Don't get me wrong i am happy i got the transplant and am THRILLED to be off that yucky machine, but i just wish things would of gone different, and no matter how hard i try to get over it, i cant. The 70 day inquest into the situation will be over soon. Maybe after hearing some explanation i might feel better... hmmmm maybe.
I just hope i can try to FULLY accept what has happend and move on with it.
Thats about it for my transplant update tonight. Thanks for listening.
Love you all.
Amanda
xxoo
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Amanda you have every right to feel that way. What happened to you was not right. Nobody who gets a kidney transplant should have to worry about that. There's enough to handle with the transplant itself! I hope that with time things get better for you and I will pray that the Hep C stays dormant forever. :grouphug;
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:grouphug;
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Amanda what you are feeling is 100% normal and unfortunately when everyone else calls it a day you are the one that lives with this fear and uncertainty day in and day out. No matter how big of a law suit or settlement you get, (if any) could never take the fear away. Hopefully in time it won't be a daily reminder or thought.
:grouphug;
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Mans I wish I could come give you a great big hug but this is the best I can do :cuddle; and I'd bring you some vans so I could say Mans loves her vans.
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Just wanted to echo what everyone else has said. The fear and distress are very normal, I'd be freaked out if you WEREN'T feeling these things. I hope the HepC stays completely dormant (is that possible, have they said?), or if not, that it's very well controlled with treatment and you don't ever have to suffer because of it.
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Amanda, you continue to be in my thoughts and prayers. It is so difficult, mentally, to deal with things that are out of your control. I know that all of us with kidney disease deal with that to different degrees, but having something like this inflicted on you because of someone's error - well, I can't imagine. I do hope that it stays dormant and does not cause other problems or interferes with your new kidney. :grouphug;
I agree with everyone else....your scar looks fabulous! Mine is much thicker, like Cycobully's. No matter what, it's a beautiful thing!
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your scar looks fabulous! Mine is much thicker, like Cycobully's. No matter what, it's a beautiful thing!
Couldn't agree more.
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OK I'm just joining the back of the queue to hug Amanda tight (well not TOO tight.. don't want the hard worker to gert squished!).... my it's so long I flew up to Brisbane and I still can't see the end of the queue! :)
You are reacting normally to the horrid situation life has dished out to you... in a sense to go from one frypot into another potential fire. I think you know we are all 1 million percent behind you and wishing that darn Hep C stays where it belongs... out of sight (but never out of mind).
*hugs*
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Hi All
At 3 this morning the hospital called and advised they have a Kidney for Amanda!! The chances to me of this happening before my wedding is like winning the lotto!!! The match was 6 out of 6 which you only get with identical twins!! So its a very good sign only problem os the girl who passed who we have been told is only 27 years old had been on life support for 7 weeks when her heart gave up on her! The Drs have advised she had anamonia but she is 27 and died of anamonia?? Drs dont really know what this girl died off. They dont know if this same bacteria that got her may still be in the Kidney. Drs think it will be hard one and the kidney may not work straight away cause the girl was so sick for so long..
We have taken a risk and we hope its thr right one sooo please pray for us.. She should be out of the operation at 6-7 Sydney Australia time..
Thanks for all your prayers
Rose
wow that is amazing!!!! I just had tp say 6 out of 6! Congrats!! :yahoo;
Amanda is going to have her stent removed tomorrow because she has a bad infection and they think that might be the source of it. I will let her know that everyone wants to see her scar, I tried to wake her up saying "let me take a picture of your scar" and she got mad that i woke her up. :rant; >:D :lol;
Here is a picture of Amanda and her new Kidney.
Holy crap she is soooo pretty!! What I mean is, that is someone who JUST had a transplant?? Am I missing something :thumbup;
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Your scar looks GREAT Amanda!!! I hope I'm that lucky! Keep fighting! :boxing; :cuddle;
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I'm working on writing a long story with all the details at the moment for you all. :)
On another note... I have been having a struggle lately emotionally worrying about the Hepatitis thing. I know I'm not the only one with this virus but the way i got it just makes it that much harder to get over. I am worried about what it means for me now and for my future. Don't get me wrong i am happy i got the transplant and am THRILLED to be off that yucky machine, but i just wish things would of gone different, and no matter how hard i try to get over it, i cant. The 70 day inquest into the situation will be over soon. Maybe after hearing some explanation i might feel better... hmmmm maybe.
I just hope i can try to FULLY accept what has happend and move on with it.
Thats about it for my transplant update tonight. Thanks for listening.
Love you all.
Amanda
xxoo
Manda May - Focus on your kidney for now. You will know more in the future but you need to work on what you can now, which is eating, walking, taking your meds and drinking lots of water. Hope to hear more from you soon!
:cuddle;
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Hey Everyone,
Thanks once again for you kind comments, you guys are the best. :grouphug;
Well i have had a few days to recover mentally and physically and am feeling a lot better. And as my kidney goes, it couldn't be better my creat. is now 82 :) and they are very pleased with my progress. I also started back at the gym yesterday and am feeling pretty good other than still being sore and achy around the transplant area, which I'm told is normal.
OK well here is my transplant story about getting the call.............................. :)
On the 31st of August 2007, at 2.15am in the morning the phone rang and my mother answered a phone call from my Professor he stated that there was a kidney available for me. I was in the kitchen getting a drink. My heart started beating a thousand miles a minute when I heard my mums reaction. I then spoke to My doc, and he went on to tell me that he had a kidney available for me and that the kidney was a “perfect match a 6 out of 6 antigen match, which is the best you can get, he then went on to tell me that the donor was a 28 year old Female who had died from pneumonia, and had been in hospital for several week. I was also told at that time that the donor was a recreational drug user, which was explained to me that it meant she used drugs socially. but all the test at the time had come back negative for HIV. I was also told there was no risk in the patient having any form of hepatitis. After a lot of reassurance from my Kidney Physician I then decided I would come into the ER and talk to him and the rest of the team. I got a few things together, had a quick shower, and then made my way to the hospital with my Family, rick, and cousins.
We arrived at Royal Prince Alfred Emergency Room at around 4.00am, I was soon seen by the clergy nurse who took my Observation, such as blood pressure, temperature and ECG. I was then ushered into s room in the ER with my parents, sister and rick where blood was taken, and a chest XRAY was done. I was then met in the ER by Prof. who has been a great source of support for my family in the past. He told me that he thought this kidney transplant was my best option at living a normal life, and the risk of staying on dialysis out scaled the risk of taking this transplant.
I then met with the transplant co-ordinator and surgeons who discussed the surgery and the risk.
Even though I was so nervous and scared about getting this kidney, I had been waiting for this transplant for 3 and a half years, and I was told I might not get another call for another 4 – 8 years if ever, and with all the risk been taken care of ( I thought), I had nothing to lose but to listen to the advice passed on from the red cross to the doctors and take this kidney.
After meeting all the doctors and surgeons I was waiting in the ER for another 4 hours while they waited for my blood results to come back and a room to be available on level 9, transplant.
At around 10.40pm I was escorted upstairs from the E.R to level 9 room 24 where nurses got me ready for surgery and started me on some anti-rejection drugs and told me that I would be going down to surgery at around 1.00pm. Soon after arriving upstairs I met an anesthesia doctor who went through my drug allergies and what the plan was. I was then told I need to go into surgery straight away, and between 11.00am – 11.30am I was wheeled down to level three to prepare for the surgery. While in the theater room I felt all these emotions rush in. I was so scared, excited, nervous, and most important uncertain of the outcome... i will never forget those emotions. The last thing I remember was someone telling me it was all going to be okay and we will see you soon…. And I was fast asleep.
I remember then being wheeled upstairs from recovery to transplant isolation, I distinctively remember seeing all my family and friends waiting for me, and greeting me in the hallway. I still remember that feeling…. It felt good to know that I was okay and had made it…….......
After that a lot of hard days followed due to the fact of me finding out about the donor’s complication, those days are the ones I try to forget about. Legally the matter will go further and I will make sure that a situation like that will not affect any other Australians again. But right now I will focus on getting better and appreciating my new kidney which was given to me by a selfish act by the donor family.
Most importantly everyone should concentrate on the positive of my story…. That someone died and gave me a second chance in life, off dialysis and away from the complications and routine of dialysis. Even though I know I didn’t wait as long as many of you, I was finding it very hard in the last few months, and even though I never shared it with many people I honestly didn’t know how much longer mentally I could handle it for. Regardless of my complication I am forever grateful for the young woman that lost her battle to survive on the 30th of august 2007, and her and her family will never be far from my thoughts.
Love you all.
Amanda
xxoo
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What a story! Thanks for sharing that, as well as the complications, with us all Amanda. I realize, in my own head, I've got fantasy visions of what the transplant - and life thereafter - will be like. It's nice being reminded of the realities of it all...even though it's some time away for me.
I wish you nothing but the very best while you heal and move forward with your life.
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Great story Amanda!!
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great story- :grouphug;
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Thanks for telling us Amanda! That's a great story. :cuddle;
(modified later because I can't type anymore!)
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:clap; BRAVO Amanda, now that is what i am talking about, thats what i wanted to hear, :2thumbsup; I am so proud of you, YOU GO GIRL :clap; You just keep on doing what your doing to get healthy, and STAY healthy and remember, you always have us besides you :grouphug; I love ya girlfriend :cuddle;
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thank you for sharing Amanda *hugs*
I have been told almost always "the call" comes in the early hours... I always wonder if/when I will get thatcall and how it will be.. I imagine pretty much the same as you felt.. anxious, excited, nervous... everything!!!
It is so good to hear you are doing so well with your results and able to get back to living a good life.. we know about your complication and pray it keeps to itself but I am sure being free of that bloody machine and everything associated with it is such a wonderful blessing....
thank you for sharing so much of your trials and tribulations with us all. You are an inspiration to many here.
xox
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Thank You Amanda
willieandwinnie
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Hi Amanda,
You are are great at adapting to life - and that will help you in whatever you have to face. You are strong and brave and smart! I hope your health stays good for a very long time!
:cuddle; Love you!
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Amanda,
Your a beautiful girl, inside and out and you deserve it.
You will always be in my thoughts and hey just like me your a LIL AUSSIE BATTLER you GO GIRL !!!! :ausflag;
Love Ya
Tamara xxxx oooo :grouphug; :cuddle; :waving; :clap; ;D :grouphug;
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:cuddle;
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Thanks for sharing your story Amanda!! :cuddle;
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And as my kidney goes, it couldn't be better my creat. is now 82 :)
:secret; goodness me!!! Very impressive, Amanda. I'm so pleased!! I haven't even finished reading your post yet, but had to comment on this as it's such a great creatinine level :yahoo;
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Amanda, your positive attitude is truly an inspiration. I wish you the best of luck and I hope you have a long and healthy life with your new kidney :grouphug;
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Excellent story, and I love how you focus on the positives! Your truly an inspriing positive person and I hope nothing but the best for you hun! :grouphug;
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You're an amazing young woman Amanda! You will forever be stronger in many ways after this experience. :grouphug;
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Thanks again everyone. :cuddle;
Well i found out today i have a small hemotoma (can;t rememebr the exact word) in other words i think it meant a blood clot near my kidney they said i shouldn't be worried, and if it gets bigger i might have to get it removed. Has anyone else experienced this? I hope it goes away soon and i don't need surgery.
My creat is still in the 80's so they are very pleased.
Hope everyone is well.
Amanda
xxoo
:cuddle;
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Amanda,
Sorry to see your post about the hematoma. I will pray it turns out to be
nothing. Your strength is truly an inspiration for many people. Keep up
your positive attitude! God Bless,
Anne
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Glad your doing well and hope you don't need another surgery! :grouphug;
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Thinkin of ya Amanda, hope the hematoma stays under control.
Tamara xxxx oooo :grouphug;
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Wow Amanda! What a roller coaster ride you have been on. I can't begin to imagine the excitement, pain, anger, fear and disbelief you must have felt over the past six weeks. You are truly an inspiration. What a beautiful soul you have. Thank you for sharing your story with us. You have been and continue to be in my prayers Amanda. :grouphug;
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Just thought i would do a quick update my creat. has come down even lower now to 70! :bandance;
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YOU GO GIRL ! :bandance; :clap; :bandance; :cuddle;
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:clap;
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:yahoo;
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:bandance; :bandance; :bandance; ;D
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:thumbup;
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Awesome Amanda! :)
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...doncha love being able to share your creat number with people who not only understand it, but celebrate it when it's that low???!!!
Keep fighting the good fight Amanda...you're giving us all hope! (no pressure there, huh?) ;D
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Yay!!!! :yahoo; :yahoo; :clap; That is so wonderful about the creatine!! Let us know about the hematoma, please!!!
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Hey everyone,
well my blood collection near the kidney is still there but poses no concern for my new kidney. I have another UTI infection which they are trying to treat with stronger antibiotics so it wont come back again.
I have had a few dramas at the hospital dealing with my complication and working out who exactly is to blame for the situation, and its just extra drama i don't feel like dealing with at the moment. Hopefully with time things will get sorted out.
Amanda
xxoo
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Hopefully it's something you can sort out a little further down the track - have a rest first, if possible. You've been through so much already.
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Awww my friend, i am so sorry your having these complications, i hope and pray they get you all fixed up and good as new soon so you can get out there and DO YOUR THANG ;) ;) :yahoo; Just remember, we are here for you and we are all worried about'cha, we love ya girlfriend :grouphug;
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I hope it all gets straightened out soon and you get that UTI gone for good. :grouphug;
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Stay positive Amanda...you've had an amazing journey and, apparently, it's not quite done yet...but with your strenghth and attitude, you will make it through this. We're all pulling for you!!
:2thumbsup;
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An incredible creat level for an incredible woman. Amanda you are a wonder!!!
xox
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:bandance; Go little kidney GO :yahoo;
Amanda, you will be hitting the dance floor in no time! :bandance;
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I'm so glad your numbers are improving and everything seems fine. Will this hematoma thingy clear up on it's own? Hopefully it's nothing to worry aout. You have much to be happy for and your family here at IHD love you bunches. Hang in there girl! :)
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Hey Everyone..
I have not been online in the last few days because i have been a bit sick... but im back on track now. :)
My kidney is still going good and my creat. is 72.
Amanda
xxoo
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Hi 'Manda Dahling, thank you for checking in with us, sorry you havent been feeling well but i am glad to hear you are feeling better. We've missed you around here, it's been awfully quiet ;) ::)
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:cuddle; Good to hear Amanda. I have missed you!
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Hey girl - I was wondering if you were out running around or what! Thanks for checking in - you know us mom's - we worry!
Love you! :cuddle;
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Glad you're back and feeling better!!
:2thumbsup;
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Good to hear from you & glad things are working out :thumbup;
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Sorry you had a rough time for a few days. Keep getting better! (I'll drink to that :wine;)
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Yep girlie you need to keep on keepin on!
Stay on Track ! :waving; :cuddle;
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Glad you are feeling better. :grouphug;
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Hey Everyone!
Hope you are all doing well, i have not been on in the last couple of days because... frankly my computer and internet is RETARDED!! :banghead;
Anyhow... my Creat. jumps between 70 - 90 lately.. its been going up a bit because I've started going harder at the gym lately. I'm feeling great and back on track! and the doctors are happy with how things are going.. I have a scheduled routine biopsy on Monday to check that all is going well and there is no sign of rejection! (they do these on everyone between 8 - 12 weeks).
I also wanted to add to something regardless of my complication and troubles i would not take back me having a transplant for anything. I feel fantastic.. and i believe things happen for a reason...and i was meant to have this kidney.... to anyone who believes a transplant is for them... don't ever give up hope or be scared of the what is to be... its worth every risk that a transplant throws in front of you... and i hope all u waiting get that call in time... :cuddle;
Love
Amanda
xxoo
:grouphug;
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Good to hear you are feeling so good. I cant wait till I get my call, I have not been feeling the best as of late.
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Aw sorry to hear that Joe... I hope you feel better AND will be praying you get that call soon my friend. :cuddle;
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You go girl, so glad to hear of your progress !
Makes me look forward to hopefully how I will be in a couple of weeks !
Take Care
:cuddle; :grouphug; :cuddle;
P.S Don't work to hard, you will make it hard for all the woman lookin for a man, they will be lookin at you too much ! ;D ;) ;D
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I also wanted to add to something regardless of my complication and troubles i would not take back me having a transplant for anything. I feel fantastic.. and i believe things happen for a reason...and i was meant to have this kidney.... to anyone who believes a transplant is for them... don't ever give up hope or be scared of the what is to be... its worth every risk that a transplant throws in front of you... and i hope all u waiting get that call in time... :cuddle;
Love
Amanda
xxoo
:grouphug;
:) I love hearing how you've adapted and come full circle Amanda! To know how grateful you are even after you've been through so many anxious moments and rollercoaster emotions is really heartwarming.
You are one special girl!!
:bestwishes;
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Yay Amanda.. Your awesome girl! Keep it up :) :grouphug;
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Keep doing what your doing Amanda, just drink more fluidswhile at the gym.
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Mans glad everything is going good and remember if you need me to I'll come kick some butt with you as long as your buying :beer1;
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Amanda you and Tamara keep me going lately in my wait for THE CALL. Even though I've only been waiting around 2 years it's still a bit stresfull at times.. half of me imagining how it might be to have a transplant (can you guess how many iced coffees I am going to drink?!! or slurpees... or hell bottles of ice cold water??? :) )... and then I wonder how long it will be till I get that call.. then I get annoyed with myself for thinking about life WITH a transplant... like teasing myself when it's not happening yet... so sometimes can get a bit disheartening... specially when my sister's donation was knocked back earlier this year...
but you two lovely ladies give me faith and I so enjoy reading how well you are both doing and improving every day... (of course I am slightly envious, but not in a bad way!)....
so keep up the good work lil donated kidneys may your lovely owners be healthy and happy for years to come (oh did I mention drop dead gorgeous too???? :) )...
xox
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Amanda, you are truly an inspiration and your attitude is beautiful, positive and makes me smile. Keep it up girl. You are doing great!!
xoxo
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I also wanted to add to something regardless of my complication and troubles i would not take back me having a transplant for anything. I feel fantastic.. and i believe things happen for a reason...and i was meant to have this kidney.... to anyone who believes a transplant is for them... don't ever give up hope or be scared of the what is to be... its worth every risk that a transplant throws in front of you... and i hope all u waiting get that call in time... :cuddle;
This is how I feel too, Amanda, although my complications have been much simpler than yours, so it was great to read your post. :cuddle;
You mentioned the gym also. What advice, if any, have the renal docs given regarding excerise? I've had problems trying to get back to exercise due to not being able to use my legs/feet properly, but I really want to start toning up again, etc. I was told it's too early to do things like sit ups, but haven't had much other advice. Thought I might at least start on some arm weights.
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Thanks everyone once again for the nice thoughts and comments.
Well my creat. has been around 80 the last week which is good number because ive started going to the gym everyday.
I will be getting my biopsy results tomorrow, but seeing i have not heard back from them no news is good news.
Here is a list of my drugs to date 9 weeks post transplant!
Cellcept 750mg twice a Day
Tacrolimus (prograf) 2.5 mg Twice a Day
Prednisolone 5mg Once a Day (going back to 2.5 tomorrow!)
Valcyte 450mg Once a Day
Calcitriol .25mg Once a Day
Amanda
xxoo
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Woohoo you go Girl !
:clap; :yahoo; :clap; :cuddle;
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YAYYYY Amanda...great creat number...and especially happy that you'll be reducing that prednisone dosage tomorrow (that's such nasty stuff)...and I'll assume, since you're back to the gym, that overall you are feeling OK...how's everything in your head though? Your posts sound great, but just wanted to check :)
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YAYYYY Amanda...great creat number...and especially happy that you'll be reducing that prednisone dosage tomorrow (that's such nasty stuff)...and I'll assume, since you're back to the gym, that overall you are feeling OK...how's everything in your head though? Your posts sound great, but just wanted to check :)
KR Cincy... you must be good at reading peoples mind ;) I've had a few dramas at the hospital with some health stuff (unrelated to the kidney) but I'm hoping it will turn out to be nothing. And yes i will be taken off the prednisone all together... but i have not had any dramatic side effects because I'm such small dosage... so i can't complain.
Thanks again. :cuddle;
Amanda
xxoo
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Glad you are doing so very well. From reading other posts and from personal experience, we all have had some drama post transplant. Like you it is unrelated. I wonder if after transplant we all are more cautious and try to take better care of ourselves than the average person. :cuddle;
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Here is another quick update-
My creat. today was 67 and all my other results are pretty good! I've been going to the gym atleast 6 days a week, and ive decided to defer university (college) until next year.
Amanda
xxoo
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Sounds great Amanda :thumbup;
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You go girl ! :yahoo; :clap; :bandance; :yahoo;
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Here is another quick update-
My creat. today was 67 and all my other results are pretty good! I've been going to the gym at least 6 days a week, and Ive decided to defer university (college) until next year.
Amanda
xxoo
Well at least you won't have that extra stress right now, besides at least I can stay smarter than you for another year.. ;)
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:yahoo; :2thumbsup;
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GREAT numbers!! I hope you're feeling good physically AND emotionally...stay focused on what's important and what you want your future to be and know we're all here for you!
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I'm Back alive and well.....!
Thank you everyone who messaged me or called me wondering where i have been. My STUPID DELL laptop was not working for a week and i only got it back on Friday. And then i went away with the girls for the weekend, which i might add was the FANTASTIC. :) And just got home not to long ago.
My Health has been going pretty good, i have not felt this good in a long time. I have been going to the gym nearly almost everyday and have just been enjoying my time free from dialysis as you never know what the future holds.
Even while i was away from the computer for a week or so, i am always thinking of you all, and hoping everyone is safe and well.
But jezzzz! i have a lot of reading to catching up to do!! ;D
Amanda
xxoo
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Mans I'm so glad all is well with you :bandance;
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So great to hear your doing wonderfully :grouphug;
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I'm glad to hear from you again and that you're doing so well! :cuddle;
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So happy to read you are doing so well,
Amanda! Keep on keepin' on!!! :clap;
Anne
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Well, I did miss you. But if you're out having fun and feeling good then I am not about to complain! :clap;
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Glad the reason you were away was because you were having fun, and a bloody stupid computer :banghead;
Keep on having Fun Girl ! :clap;
Take Care Tamara xxx ooo
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Glad you're doing well!
I have been going to the gym nearly almost everyday
What kind of exercises can you do, and what kind of exercise do you have to avoid? Did you have to get advice from your doctors before you went back to gym?
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Thanks Everyone. :cuddle;
Glad you're doing well!
I have been going to the gym nearly almost everyday
What kind of exercises can you do, and what kind of exercise do you have to avoid? Did you have to get advice from your doctors before you went back to gym?
Cycobully i am on a trail with prograf, which investigates the increase of diabetes and prograf. They are seeing that people that combine weight training and low body mass index have a 70 percent less chance to get diabetes. I have been told i am able to do anything.
I do weight training which involves all the major muscles, and then i do 2 hours of cardio, a combination of walking, running, cross trainer, stepper, rower and bike.
You wouldn't start at doing that much, just build it up slowly and listen to your body. I know a few people say that the drugs we are on after transplant make you put on weight, but if you exercise and eat well you shouldn't have a problem with that. I weigh the same as i did before i went in for the operation.
Amanda
xxoo
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Hi Amanda :waving; So glad to see you back and posting again ;) missed ya girlfriend :cuddle;
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Thanks for the info Amanda.
I have put on weight since the operation, but I'm still at the lower-end of the healthy weight range, so that's okay. I just hate the flabby belly that I have developed, but I found sit ups uncomfortable and when I mentioned this to my nephrologist he basically said "oh no, don't be doing that yet!", so it just made me wonder if there were any particular wide-ranging restrictions for transplant patients.
I can't do a lot of other exercise because I can't walk properly still. I can do upper body weight training of course, I've just been a bit lazy about it. :)
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I know a few people say that the drugs we are on after transplant make you put on weight, but if you exercise and eat well you shouldn't have a problem with that. I weigh the same as i did before i went in for the operation.
Amanda
xxoo
You are correct. :) With my first transplant, I remained the same weight as before it, and actually ended up losing some because I had so much energy to do so much more. However, this time, it has nothing to do with my transplant as to why I am gaining weight, it's because I can't really do the exercising part right now, however, I *can* watch what I eat.. and I should... it's just so hard to resist what you've been denied for so many years. :lol;
:grouphug;
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You are awesome Amanda. Thanks for posting the good happenings. :waving;
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Amanda you are such a good role model. Keep it up. :cuddle;
I had lost weight after my transplant but put it back on and then some. Some of the meds do mess with hormones and metabolism.
Hopefully I can take the weight back off. I didn't start gaining until about 6 months afterwards.
I still am having pain in my side. That's why I am up late now instead of sleeping. I did exercise tonight which makes it worse.
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Good to hear you are doing so well :thumbup;
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I was wondering where you wandered off to...but am very happy to hear you are doing well and enjoying life.
Amanda and her girlfriends out for a weekend...it boggles the mind wondering what all happend then!!! >:D
Welcome back...it's always wonderful to hear from you!!
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Thanks Everyone. :cuddle;
Glad you're doing well!
I have been going to the gym nearly almost everyday
What kind of exercises can you do, and what kind of exercise do you have to avoid? Did you have to get advice from your doctors before you went back to gym?
Cycobully i am on a trail with prograf, which investigates the increase of diabetes and prograf. They are seeing that people that combine weight training and low body mass index have a 70 percent less chance to get diabetes. I have been told i am able to do anything.
I do weight training which involves all the major muscles, and then i do 2 hours of cardio, a combination of walking, running, cross trainer, stepper, rower and bike.
You wouldn't start at doing that much, just build it up slowly and listen to your body. I know a few people say that the drugs we are on after transplant make you put on weight, but if you exercise and eat well you shouldn't have a problem with that. I weigh the same as i did before i went in for the operation.
Amanda
xxoo
Hi Manda -
How often are you doing cardio? It can't be 2 hours everyday? Are you still doing weight training daily? I bet you're strong and lean!
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Hey Karol... :cuddle;
Well i was doing it until a few days ago, my creat. was getting high they said because of too much exercise. So for the last 3 days they told me not to do any exercise and I'm doing a blood test to check the levels tomorrow, just so they can see a baseline without exercise. Ive been still continuing with mt exercise routine, but now i do Pilate's 3 times a week, power walking for an hour 3 times a week, one day off, and weight training 4 days mixed in with the other exercises. :)
The other good news I'm totally off Prograf!!!
Everything else is going well but the only problem is i CAN;T SLEEP!! :-\
Amanda
xxoo
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Hi Mighty Manda! :ausflag;
I don't know how you can stay awake after all that exercise! Makes me want to take a nap just thinking about it!
How long since you last took Prograf? Do they have you on CellCept or any other immuno?
Jenna's creatinine went up to 1.3 this week so they are reducing her Prograf. She isn't going to the gym because her trainer left to have a baby, but she still walks about an hour a day.
Hope things stay good!
Love u! :cuddle;
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You are our IHD poster child. Glad things are going well and I hope the Creat level goes down again.
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Oh Amanda you can't sleep because you've been overworking that bf of yours haven't you?!!?! >:D
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I just read this and I'm stunned and happy that you are doing so well.
Take care. :cuddle;
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I just want to start off by saying AGAIN..... i hate dell. Anyway...
I have just been able to get on line to a computer tonight.... i have been having a few dramas with my creat. going up, and just in case they did a biopsy on Thursday (the day i saw charee). But the results have been all good. I have been feeling well the last few days, and its finally hitting me that i have not been on dialysis for 3 and a half months... :)
I got to see charee for a very short time in clinic on Thursday, we were both very busy with appointments, and me going down to do a biopsy. But it was great to see her even if it was just for a short time. She looked beautiful and im glad to hear she is one step closer to a transplant. :cuddle;
Oh Amanda you can't sleep because you've been overworking that bf of yours haven't you?!!?! >:D
maybe ;)
Thanks again for still thinking of me.
Love you all.
Amanda
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uh well I don't know about visuals Amanda honey.... that seems a bit wrong somehow... but I like the idea that you're doing well and if that includes doing THAT then... well... WOOHOO!! :)
wow no dialysis for 3 and a half months.. sounds like a dream....
I want in! :)
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Richard .. that sounded wrong so i modified it. ;D
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Hey Amanda!
Haven't seen you on IHD for awhile - hope all is ok - hope to see you in chat soon!
:waving;
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Hey Amanda!
Haven't seen you on IHD for awhile - hope all is ok - hope to see you in chat soon!
:waving;
spoke to Amanda yesterday she is having more computer problems and hopes to be on line soon.
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:cuddle; Thanks Charee, I appreciate the update. Give her my love if you speak to her again.
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Thanks Charee :) Glad to know it is "only" computer problems and not kidney problems!!!!
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Well i got my blood test results back today.... My creat still sitting around 70 - 80 which they are happy with. My CMV level still came back at 1000, but that is better compared to what it was 2 weeks ago at 100,000.
I have attached the most recent photo, It was taken just a few days before i went into hospital at my friends wedding in which i was bridesmaid at.
Amanda
xxoo
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Well i got my blood test results back today.... My creat still sitting around 70 - 80 which they are happy with. My CMV level still came back at 1000, but that is better compared to what it was 2 weeks ago at 100,000.
I have attached the most recent photo, It was taken just a few days before i went into hospital at my friends wedding in which i was bridesmaid at.
Amanda
xxoo
Glad you are doing great!
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Glad to hear things are going well for you, Amanda! There's no picture attached, though?
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I have attached the most recent photo, It was taken just a few days before i went into hospital at my friends wedding in which i was bridesmaid at.
Hey, where'd the photo go?? ::)
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Im on my new Eee pc by asus that rick had bought me to take to uni with me and i dont have many programs on the thing, so i can not resize the picture.. and it was HUGE.
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Im on my new Eee pc by asus that rick had bought me to take to uni with me and i dont have many programs on the thing, so i can not resize the picture.. and it was HUGE.
I am glad you are feeling better Amanda :cuddle;
We would all love to see the photo. I am sure Sluff would help and resize the pic for you. ;D ;)
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Hey Amanda, i see your online now, i can resize that photo for ya ;)
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Ops i didn't see you on line Susie...
The photo was taken at my friends wedding ..i was bridesmaid...the people in the photo are a friend, and my boyfriends cousin. This is 4 months post transplant.
Please resize if you can. Thank you.
:)
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I swear you have the prettiest eyeballs I have ever seen! :)
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You look GREAT, Amanda!
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Looking good as always Amanda :thumbup;
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Amanda,
You look just wonderful! Terrific picture,
and so happy to read your numbers are good
and you feel good! :clap; :clap;
Anne
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Hey Amanda.... :-* Lookin' Good - George
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Great photo manda. Looking hot as ever. :grouphug;
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Did you ever notice pretty people have pretty friends? :lol;
Great photo Amanda, always looking great hun. :grouphug;
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What a babe!
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I agree with karol though I can't say that lest Amanda's bf come rushing after me..... :)
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You Look Great Amanda! ( But then how could you not ! Pretty Girl ! ) :cuddle;
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Dang Chica, you be lookin' muy caliente (very hot) lol, Thanks for posting the pic hot stuff :P
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:2thumbsup; :2thumbsup; :2thumbsup;
;D
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Very Nice Amanda! You are a doll! :clap;
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Hi Amanda - which one are you, the one on the right? You all look great. I am still looking lousy 7.5 months post-transplant, you make me jealous! But I'm still super happy for you. Hope I can look even half that good when I am matron of honour at my sister's wedding in August.
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Thanks for the nice comments.
Yes louise, im the one on the right. After a transplant i dont thnk any of us feel that great, but i think it helped that they lowered my drugs so fast.
Louise im sure you will look beautiufl at your sisters wedding. Thats somet.hing to look forward to!
This is what im on at the moment.
prednisone - 5 mg
cellcept - 750
ganciclovir - (spelling) 900mg
Pariet - 20mg
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Wow, so few drugs, that's fantastic! Great news.
My prednisolone just got pushed from 9 mg back up to 15 last week, and the Cellcept reduced as I got sick with a virus, and they're looking into the why's and what for's. >:( Prednisolone sucks.
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Thanks for the nice comments.
Yes louise, im the one on the right. After a transplant i dont thnk any of us feel that great, but i think it helped that they lowered my drugs so fast.
Louise im sure you will look beautiufl at your sisters wedding. Thats somet.hing to look forward to!
This is what im on at the moment.
prednisone - 5 mg
cellcept - 750
ganciclovir - (spelling) 900mg
Pariet - 20mg
You like fantastic and I only wish I could of been on 5mg of prednisone for all the years I was on it, I would still have my face like you do!! :)
I have heard of the cellcept also, was on it my first transplant, but the other 2 I have never heard of, what are they?
I am on:
Prograf: 2.5mg/twice a day
Rapamune: 3mg/once a day
Those are my immunosupressives.
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hey angela. :)
Gancicglovir is for the cmv and
pariet is an anti acid, my stomach seems to burn all the time but i think it must be drug related...
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It probably is drug related. My doctors put me on Somac as a preventative measure against stomach acid/ulcers, because they tell me the immuno suppressants can cause this.
And I think the CMV drug is Valgancyclovir (there is also one called just called Vancyclovir, I think, but I don't know what the difference is). I was on Valgancyclovir for some time as CMV was showing in my bloods, although I was asymptomatic.
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Yep, the burning is medication related. My first transplant, I had to take Maalox every time I took meds (ick!!), then with the last one and this one they switched to Prilosec, thank goodness. Though as I recall, last time the Prilosec didn't work and I had to change to Nexium.
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amanda, youre gorgeous!!!
got any single friends??
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Hmm. Somehow I lost track of this thread a long time ago. Amanda, you look fantastic! I hope I look a quarter as good as you do after my transplant! :cuddle;
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I wished I looked a quarter good as that now! :)
Damn medicines.
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ahem (cough). I believe I have first dibs on any nice single female friends of Amanda's :D
For one I think I'm closer!!
;)
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Hey Everyone,
This is a long overdue update… well where do I start. …. I’ve been online still to check up on everyone, but have mentally found it hard to be online here and posting. (For many reasons.).
On a health front, I feel great (touch wood). I am physically at the best health I have been at in a long time. I am still going to the gym and training 5 days a week, and since about 2 months out of the transplant, I have been on a very strict diet, which mainly consist of fresh fruits and vegetables, and some good forms of protein and carbs.
My kidney function is setting around the 80’s (not to sure about the U.S conversion on that) and my other problem is still sound asleep and not causing any dramas.
Since my transplant everyone I know has commented on how different I am, to start off with I hate most things I use to like on dialysis in regards to foods and drinks. I now LOVE coffee and also veggies, which I hated before, and my general thinking has changed. I appreciate everything for what it is, and have learnt to appreciate life to the fullest, and just to deal with things one step at a time.
I hope all is well with everyone, and I am slowly catching up on reading once again.
I have attached the most recent photo which was taken at about 7 and half months post transplant
Love to you all.
Amanda
xxoo
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Beautiful picture, thanks for the update. I trust you feel ok, but sorry for the felling you don't want to post. It is encouraging to see someone who looks great post transplant. Gives me hope for how it will be for me someday too. Be well, continue with your diet, it sounds like the one my husband offers to pts at our office. Everyone I know feels great on it.
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Amanda, lovely picture. I, personally, miss your posts. Your family has more experience with transplants and kidney disease than any family I have read about. It is hard to come here and not read Susie's posts. I told a member recently, that it would be easier to walk away from IHD than continue to lose people I learn to love. It is hard to worry about so many when there is really nothing you can do to make a difference in their lives. We all had so much fun reading about Rose's wedding and all the pre-events. And then your transplant --what a wonderful week that was for your family. We all love you here. The men LOVE just looking at you! :rofl; (RichardMel, I am not naming names!) and the women want to be you :2thumbsup; We will be here, Amanda, whenever you do post. In the meantime, enjoy life. Keep looking forward and keep the positive attitude. How are the plans for the America trip going? So, I guess I am just telling you to enjoy living--we are all very happy that you are doing well and we love you :grouphug; :grouphug;
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Amanda, you look fantastic! We miss you! :cuddle;
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Continued good health Amanda. Enjoy every minute and wring every last drop out of life. Transplants rock.
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Yay Amanda! :bandance;
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Must be something in the water in Oz. My creatinine hangs out in the 80's too, I think that is also influenced by the decade of music I love too ! ;)
Love Ya
Keep on Keepin on ,
Tamara xxx ooo
:cuddle; :grouphug; :cuddle; :grouphug; :waving;
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:waving; Hey Manda May,
I miss you in chat but not all the hours you sat on hemo typing with one hand. I am happy you're feeling good and busy living! :bandance;
:clap; Love you sweet girl!
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It was simply great hearing from you again after the silence. But please know that we are still family and that will not change. Post when you can and always let us know how you are doing. Lots of love to you. :grouphug;
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I appreciate everything for what it is, and have learnt to appreciate life to the fullest, and just to deal with things one step at a time.
Hi Amanda
Glad to hear this. I generally feel this way most of the time too, even before my transplant - but more so after (I certainly stood on a few toes here by discussing it, so I'm glad to know I'm not the only one). I hope the issues that have kept you from posting are manageable and that you are all-round doing as well as you look and sound! Great to hear from you again.
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Amanda,
Darling girl, what we all want for you is to have a busy, happy life that leaves you little time to think about the strugles you've had with dialysis! We miss talking to you, but we are thrilled for you that you are now "tether-free" from the machine. Be happy and know that we love you!
:cuddle;
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We miss you... but we understand and were here for you whenever you do post. :grouphug;
Love ya..
Angela
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I need some of your water Tamara... but not much unfortunately.... my creat is 1053 :(
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Whoa Richardmel, that's a high creatinine. :( (hopefully Amanda's pic made you feel better though lol).
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Whoa Richardmel, that's a high creatinine. :( (hopefully Amanda's pic made you feel better though lol).
Well of course... but I can't talk about that on a family website such as ours :oops;
yeah my creat has been bobbing around 1000 ever since I started dialysis. The doc doesn't seem too concerned since my calcium, phosphate and potassium levels are all pretty good (thank you Sensipar and Renegel!! )
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They told me it was time for treatment when I was still around 500. Apparently this was to do with my small build. So it was go straight to transplant, as I was lucky enough to have that option, or I could go on to dialysis first. They were actually considering putting me on dialysis first for some reason, some logic that went over my head. I just said NOOOOOOOO, give me the ^#*$&#(* transplant.
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They told me it was time for treatment when I was still around 500. Apparently this was to do with my small build. So it was go straight to transplant, as I was lucky enough to have that option, or I could go on to dialysis first. They were actually considering putting me on dialysis first for some reason, some logic that went over my head. I just said NOOOOOOOO, give me the ^#*$&#(* transplant.
I am so envious!!! :)
I didn't start dialysis until I was 900 or so. I think because I didn't have many physical symptoms(apart from being tired) and I was doing this trial to start dialysis later than earlier so that all came into it. The trigger I think was my GFR hitting 6 and they decided enough was enough... and so here I am!
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I was very symptomatic, from a very early stage. Mainly with lethargy.
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I *THINK* (and I could have this wrong) that what we call a creatinine reading of 120 is what you would call 1.2 :-\ - can anyone confirm that I've got this correct?
120 is not 1.2
here's a clinical unit conversion : http://dwjay.tripod.com/conversion.html
to convert from the large numbers (i.e. 120, 130, ..1200) to the small ones, use (µmol/L) to (mg/dL)
so, 120 would be 1.4
:)
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I should bookmark that link. It's okay this time tho, as Richard and I are speaking in the same type of measurement (umol/L). :)