*** If you got the call (for a transplant), what should you ask?

[Zach]

I know this was discussed before, but I searched and couldn't find a thing.
Since this is an important topic, let's start fresh. It's all about informed consent.

What questions would you ask before accepting the deceased donor kidney?

[Wattle]

I have a list that I keep in my diary. I am unsure of how I will react to any of the answers, but as you said Zach it is all about informed consent.

1. Antigen match with me.
2. Cause of death (Beating or Non-Beating donor)
3. Cold time and location (transplants into travel time to get to my hospital)
4. Medical history of the donor
5. Drug Use
6. Screening HIV- HepB+C NAT (Nucleic Acid Test)
7. Age
8. CMV Status

These questions are not in any particular order. They are just ones I have thought are important.
I have no idea how I will react to the answers and what would make me say no.   

[okarol]

Good list.
I think I would also ask about the antibody crossmatch - if that had been done yet.

[G-Ma]

Good List....call me dumb...please explain NAT.
Thanks

[okarol]

Nucleic Acid Test Screens for HIV
In donated blood and tissue
Posted December 31, 2008

WEDNESDAY, Dec. 31 (HealthDay News) -- The U.S. Food and Drug Administration has approved the nation's first nucleic acid test to detect the presence of HIV in donated blood and tissue.

Nucleic acid is a chemical compound that makes up the genetic material in cells. The cobas TaqScreen MPX Test screens for nucleic acid from HIV-2 and HIV-1 Group O, strains of HIV that are commonly found in Africa, the agency said in a news release. These infections also have been detected in the United States.
In addition, the test detects the most common form of the virus that causes AIDS, HIV-1 Group M, as well as two forms of hepatitis -- hepatitis C and hepatitis B.

The test is designed to be used on blood specimens obtained when the donor's heart is still beating. It's not meant to test plasma intended for further manufacturing.

The test is produced by California-based Roche Molecular Systems Inc.
To learn more about HIV testing, visit the U.S. Department of Health and Human Services.
-- U.S.News & World Report
........


As the Centres for Disease Control reported HCV transmission to multiple organ recipients from a seronegative donor who was subsequently shown to have detectable HCV RNA by a nucleic acid test, the current practice of screening organ donors only with serologic tests has come under scrutiny. More here http://www.medscape.com/viewarticle/515220_4

[RichardMEL]

Wattle - great list. I hadn't thought of CMV and I didn't know about the NAT - they do that here? That would be good to know.

I think it's a real gut feeling when it comes down to it. I wonder given the desire for one how that would influence a decision.. as in "hey an offer came along.. should I take it even though I'm not sure?" - unfortunately this whole thing involves risk and it's a calculated gamble. I have no idea how the emotions would go should I actually get that call. Sometimes I think I'd laugh and think it was a joke.. other times I think I'd be so excited/amazed/relieved(?) that I might just say yes because I want it so bad, and I want it to work...

The hardest part definitely would be hearing the information you're given and actually saying no I think. That would require some sort of internal strength I think. I know should I do that (and it's so easy when you talk about it with a nurse and say "yeah I'd knock back a 75 year old donor with a bad history" scenario) I'd always be wondering "what if?" about the organ.

I think the hardest aspect would be if they call you and have very little information to give. Do you then provisionally say yes but demand more tests/info when you're at the hospital? I think THAT would be the most difficult part.

[petey]

Marvin said his only question would be, "I can be at Duke in two hours.  Can you hold it for me until I get there?"

We've been waiting a long time, and Marvin has agreed to be listed in the "extended donor pool," too (those from older donors, those with some type of high blood pressure issues, etc.).

[Wattle]

Thanks Okarol. I was looking for information on the NAT screening test but was coming up blank.

Yes Rich they do it here ..... sometimes. It was not done on Amandas kidney due to the lab being closed.  Crazy.
I am CMV- so the status of the kidney will be important to my treatment.

And Petey, after 4 years of dialysis I am sure all my questions will fall by the wayside and all I will want to know is

"is it really mine?"

Sometimes I wish I could put my head in the sand and not worry about any of this.

[okarol]

After 3 years of reading every news article I can find about dialysis and transplant, I have to say that while it is rare, sometimes all the tests do not reveal underlying problems. This tragic story is an example http://ihatedialysis.com/forum/index.php?topic=12968.0 - I recall also that there were other 2 incidences where cancer or HCV were transmitted (also one case of rabies transmitted to recipients) and the commonality was that the donors were young people with prior unexplained fever or pain and vague symptoms - resulting in brain death. While it is impossible to be aware of a flawed diagnosis - asking questions about the recent health history is important - in my opinion. Again, these are highly unusual cases, but the results can be devastating.

[petey]

Marvin waited 5 1/2 years the first time on the "list," and he didn't get a kidney from there.  This time, he's been waiting since October 21, 2003 (5 1/2 more years).

We chose the transplant center we did because of its reputation (Duke Hospital in Durham, NC), and we trust that his team there will do all the necessary testing of a donor kidney before offering it to him.  We trust (there's that word again) that they will make sure the kidney they plan to transplant in Marvin is as near to perfect (?) as it can be and that it will be as near to perfect a match (?) as it can be.  Are we sure they will test everything?  No, I guess you can never be sure unless you do all the tests yourself -- and that's just not possible.  Does Duke make mistakes?  Yes, they do.  We are dealing with humans who are doing the testing and inputting the info in the system, afterall.  (Duke made a MAJOR mistake about five years ago when they transplanted a heart and lungs into a recipient and the blood types were not a match.  No one caught this before the transplant was done.  The recipient was an illegal alien whose parents brought her to the US for medical treatment.  They sued the hospital and the doctors involved after she died -- and after she got a second transplant, this time with the correct blood type, a few days later.)  Also, the tests don't always show all problems with the donor.

As RichardMel said, it really is just a risk with a calculated gamble.  Just because you ask, it doesn't mean that the testing was done and was done correctly.   Even though you may ask, you can never really be sure that all results are absolutely correct.  You can never really be sure that the tests done covered every single thing.  You are taking a chance. 

Marvin had a family doctor years and years ago who told him, "Look at my sign on your way out of the office.  It says, 'Dr. Ben Hardin, the Practice of Medicine.'  That's what I'm doing, Marvin; I'm practicing.  All doctors are."

It's a gamble...it's a big risk we're taking, but it is one we're willing to take.  We think it (a transplant) will add more years to Marvin's life and we think it will improve the quality of Marvin's life.  But, you never really know for sure -- and even the most exhaustive, intensive, thorough testing in the world can't guarantee this.

Marvin and I have taken big risks before -- we did so when I was his living donor.  The doctors put me off for five years because we were such a "low" match, and then when they finally agreed to let me be Marvin's donor, they cautioned us that Marvin could very likely reject my kidney.  That time, we risked both of our lives, and it was worth it.  (The kidney didn't reject, despite all the doctors' warnings.  Marvin had a reoccurrence of his disease -- IgA Nephropathy -- in his transplanted kidney.)  But, he had that transplant for three years and three months.  We'd both do it again tomorrow.

Marvin and I are both very intelligent, well-read, educated people.  We've been dealing with ESRD, dialysis, transplantation, and everything that comes with it for 14 years.  Sometimes, we think we know TOO much about all of this.  But, even so, sometimes you just have to take a leap of faith and hope that you come out on top.

[Wattle]

sometimes you just have to take a leap of faith and hope that you come out on top.

Exactly. You can ask all the questions you want but you have to have the trust to just leap.

[monrein]

That's exactly right Petey.  All the questions I ask, have asked and will continue to ask are really just a way for me to establish whether my gut trusts my team.  Then I compare the whole business to standing on the high platform of the acrobatic ring at the circus with the trapeze coming at me.  I get ready, jump and grab hold then I have to have faith that something (what this "thing" is will vary from person to person), will enable me to keep my grip, swing through the vast unknown, arrive at the other platform, jump off and then it's still not over.  There are still several tightropes that I must negotiate for quite some time to come but what gives me hope is that others have managed this before, including myself, and so I don't hesitate to make the climb and take the leap. 

[Run8]

There are still several tightropes that I must negotiate for quite some time to come but what gives me hope is that others have managed this before.                       


Sorry to get off topic, but thank you Monrein i really needed to hear that.

[paris]

Run8, you have had a tough time.  It reminds us that this isn't routine and their can be mistakes.  I keep you in my prayers all the time. 


Good question, Zach.  I'd probably ask if they had the right phone number!   

[Zach]

Trust, but verify.

[Sunny]

I would just want to make sure the donor organ isn't from an "extended criteria" person. Other than that, I have complete faith in my doctors at Stanford. They have very good survival statistics and probably don't want to mess up those stats with a risky donation.
It's all about the stats with hospitals so they look good and continue to get funded.

[Romona]

When I got called my mind went blank. When the coordinator told me "the surgeon feels this is a great match for you", I felt peace and was willing to trust him. My donor was very young. Theyhad told me so much information that I really didn't ask much. I was told about his auto immune disorder and that it wouldn't affect me. I found out aterwards his cause of death was dehydration.

[Wattle]

Trust, but verify.

OK Zach

What are the questions you would ask??

[Beth35]

Marvin had a family doctor years and years ago who told him, "Look at my sign on your way out of the office.  It says, 'Dr. Ben Hardin, the Practice of Medicine.'  That's what I'm doing, Marvin; I'm practicing.  All doctors are."

Okay that statement was both funny and scary all at the same time.  LOL!

I didn't even know people asked questions when they got "the call."  I had gotten three calls before the real one where they told me I was a candidate but then they gave it to the person who was a better match.  That was really hard to go through.  So I had been waiting five years and didn't know how much longer I could do dialysis.  It was just taking everything out of me.  I was student teaching in Kindergarten and got the call in the middle of the night.  They told me they had a kidney for me and I just sat there and cried.  I couldn't believe it.  So I asked no questions.  I just took a shower and hit the road to the hospital. 

[willieandwinnie]

Len got his call at 2:30am and we had done dialysis that night and he had taken sleeping pills. When my cell phone rang I thought I was dreaming and then the house phone rang. Always bad new in the middle of the night, right? The nurse said she had to speak to Len, asked if he had been sick, ran a fever and a few other questions. Told him to go splash cold water on his face and she would call back in 15 minutes. When she called back I asked the questions because Len was still punchy. I asked how old was he, what did he die from, HIV, Hep C, how much of a match and drug use. The nurse told me that the guy was a crack head but crack didn't effect the kidneys like heroin and because I had bunches of information from ihd, I asked Len if he was ready and he said how soon should I be there. I would suggest writing your questions down and having them in a handy place so you don't have to get on ihd and search for what you should ask in the middle of the night. 

[RichardMEL]

Well Beth I imagine that would be common. I had a nurse talk to me a few months ago about it basically saying "If they call you at 2am and wake you up what are you going to say?" and it's a good point. I really don't know. It's fine to have strategies in your mind but when the moment comes after waiting for so long? I think as someone (Zach?) said above "Trust, and verify" - as much as one can anywya. Given I've been told that I have aparently matched on a few organs already but not been called as others waiting longer got them (and that's totally fine) I guess I have a fair idea that when they call that WILL be it and they won't call me unless it does match well and I am the best candidate... I'm sure if my wits are about me I'll ask about the donor.. what they died of, any obvious test things I need to worry about and so on, but who really knows when the time comes?

I hope soon I am telling my story here and can explain that I said absolutely nothing except "Thank you." and "when should I be at the hospital?" (note; I live across the road from it...)

[Beth35]

Richard, that is awesome that you live across the street from the hospital.  We had quite the harrowing ride on the freeway.  (LONG story!)

I did end up writing a letter to the mother of my donor and she wrote me back saying that her daughter was 35 and died of a blood clot to the brain?  So she was brain dead.  It was very emotional to actually imagine the young person who died and yet saved my life. 

It's funny because I had been up super late preparing to be observed by my professor the next day on a lesson I was doing in Kindergarten.  Well three in the morning I got that call and that changed everything. 

[RichardMEL]

Beth - I am so glad you got to write to your donor's family (I know this is off topic now). It's something I've thought about on and off in connection with the prospect of getting a transplant. I know that I would want to relate to the family of someone who unfortunately had to pass away for me (and others) to get the gift of life just WHAT it would mean for me, and how it would (well would HAVE) changed my life for the better allowing the freedom to live as full a life as I could (hopefully, anyway!)... to show how greatful I was but also that their loved one's  generous decision to donate was something so positive out of a tragedy.

I don't *want* anyone to die, but I also understand that part of it is not something I am controlling or involved in personally. I just know that should I be lucky enough to get a donated organ, and should it be successful I would want to show my apprieciation in any way I could. I already know, for example, I would want to participate in our local transplant forums the hospital holds for people waiting... hopefully on the side of the successful one.

But for now.. that is all in the future. I have to get the chance to ask those questions first!!!!

[Beth35]

Oh yes Richard.  It was awesome to be able to tell them how my life has changed for the better.  And getting that letter in the mail was so exciting.  Of course I cried my eyes out while reading it.  My donor's mom told me it has touched her to know that although her daughter passed away, that she was living in all of us who got her organs.  That made her feel good.  She actually sent me a Christmas card this year.  So great to hear from her.

You'll get that moment one day!  But yes, gotta ask those questions first!

[pelagia]

I realize that it's easy to focus on the things that can go wrong in a transplant. The problems tend to make the headlines.  And, I have been sensitized and saddened by reading here at IHD what can go wrong for real people that we care about.  At the same time, my understanding is that, by a large margin, most transplant recipients die of cardiovascular disease.  Those statistics would have to include those who took the kidney that someone else passed on.