Amanda got the call.. The day before my wedding

[Falkenbach]

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).

[kidney4traci]

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. 

[Black]

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.

[Jill D.]

Amanda - this sucks in the hugest way possible. I think about you constantly, and you know how much we all love you. 

[boxman55]

Amanda, so sorry my God it sounds so surreal but I know it is a real nightmare. My prayers are with you...Boxman

[Falkenbach]

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.

[MiSSis]

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.

[mrhecht]

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?

[angela515]

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.

[paris]

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!

[angela515]

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..

[Wattle]

We don't sign any kind of papers here.   

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.

    

[okarol]

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.

[paris]

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.

[angela515]

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. 

[Falkenbach]

I am stunned and angry too. Can't stop thinking about it.

[RichardMEL]

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.....

[frankieb]

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.   

[angela515]

We don't sign any kind of papers here.   

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.

    

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...

[paddbear0000]

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!).   

[angela515]

Sorry your having so many bad thoughts/dreams... why don't ya go read all the good outcome story's? Maybe it'll help

[Wattle]

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.

[angela515]

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.

[Romona]

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!).

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. 

Love ya Amanda. Hang in there!

[mrhecht]

Praying for you Amanda!