When the call comes.... What questions do I ask?

[Wattle]

 
    I am waiting for a transplant on the cadaver list, like many of you are. Some days it totally consumes me and I can think of nothing else. "where will I be" "what do I take" blah blah blah     

I have also started to question what kind of kidney am I going to be offered. I would be grateful if you could give me some suggestions of the questions I should ask, if and when "the call" comes.      Should I knock one back? Under what circumstances? Do I do a drug trial?

I know I will lose my head     so maybe having a list of my own ready is a good idea.

[paris]

When I was first listed, I thought I should get my life in order and be ready whenever the "call" came.  Now, I don't even think about it. I keep my cell phone with me; I let the transplant co-ordinator know if I am going out of town - but for the most part, I just don't think about it.  It can consume you every thought and that will wear you out.  Ask questions, feel prepared and then go on living.    You always post good questions - makes everyone think!

[jbeany]

There's a post on here with a list of things you should know.  It's in this topic about extended protocol transplants
http://ihatedialysis.com/forum/index.php?topic=2608.20

If you get the call and they say "we have a kidney for you" your first response would not be "is it from an ECD" - but  after reading this it might.

From the first time I was "on the list" in 1992 and again now in 2007 (no transplant, but different story for another time) it has always been my policy to ask these specific questions about a cadaveric donor, in this order of importance:
1 - antigen match with me
2 - cold time when I am called & location, (i.e. translantes into travel time to get to my hospital)
3 - cause of death
4 - medical history
5 - age

I have them written down so I won't forget anything. The way I look at it, when I am given medication, whether IV or by mouth, I want to know the name, the dosage, interactions and possible side effects. Why would I accept anything less when someone wants to put an actual ORGAN in my body? I think, that as recipients, we must bear the responsibility of informing ourselves and FORCING our medical providers to inform us. I was burned too many times in the beginning of my ESRD experience to ever expect that anyone will fully inform me unless I make them.

After reading the other post, I think I would add Hep B status, EBV status and CMV status. (Does it match your own?)

[Wattle]

There's a post on here with a list of things you should know.  It's in this topic about extended protocol transplants
http://ihatedialysis.com/forum/index.php?topic=2608.20

If you get the call and they say "we have a kidney for you" your first response would not be "is it from an ECD" - but  after reading this it might.

From the first time I was "on the list" in 1992 and again now in 2007 (no transplant, but different story for another time) it has always been my policy to ask these specific questions about a cadaveric donor, in this order of importance:
1 - antigen match with me
2 - cold time when I am called & location, (i.e. translantes into travel time to get to my hospital)
3 - cause of death
4 - medical history
5 - age

I have them written down so I won't forget anything. The way I look at it, when I am given medication, whether IV or by mouth, I want to know the name, the dosage, interactions and possible side effects. Why would I accept anything less when someone wants to put an actual ORGAN in my body? I think, that as recipients, we must bear the responsibility of informing ourselves and FORCING our medical providers to inform us. I was burned too many times in the beginning of my ESRD experience to ever expect that anyone will fully inform me unless I make them.

After reading the other post, I think I would add Hep B status, EBV status and CMV status. (Does it match your own?)

   Thanks Jbeany,

I somehow missed that post  I have now gone back and read the posts. We don't have an ECD list here (well not that I have been told) and I have not signed any consent form. So I assume if I am going to offered one I won't be told until the eleventh hour. I had better have my wits about me and ask ALL the facts upfront!   

[livecam]

You have to try to not let this drive you nuts because it can very easily.  I also ran the where and what ifs through my mind often and in the end it didn't play out the way I expected.  The best thing you can do is try to stay positive and especially healthy.  Avoid people with contagious illnesses like the plague.  If you have a cold when the call comes there is no transplant.

Knocking one back is a very bad idea.  From the time you are called you can eat or drink nothing, major surgery is right around the corner.  It is a time to be nervous but also very very happy.  You will know that when you wake up there will be no more dialysis.

I had a sense several times that the time was near.  The last time that feeling hit I was two days from the real call and I felt it the strongest in those days right before it.  I had always imagined being away somewhere and having to beat feet to an airport to get back in time for the fun.  Instead we were in the server room installing equipment when the magic call came.

Transplant centers have a really good idea of how to deal with the transplant patient from the moment they call you.  They took care of everything for us including accommodations for my family both during and for a couple of weeks after the transplant.  Just relax and let it happen, it will when you least suspect.

[RichardMEL]

Thought I would add to this old topic based on the conversation I had with a guy yesterday.

They brought this guy into the unit to take fluid off. It turns out he got a transplant last Friday (hooray!!!  ).

So I was talking to him about it and I asked him about when the call was and how it came about. His was sort of funny really. He said he normally gets up around 0400 to go to work, but this day he slept in for unknown reasons, so around 5am his boss called and asked where he was... so he's like "yep, I'm on my way".. so when his phone rang again at 0530 he thought it was the boss giving him grief.. but it was the hospital!

Now what's relevant to this thread is that according to him they basically said "We've got a kidney for you. Come on in" and he wasn't really given any information about the donor or condition of the kidney or anything. He told me he didn't ask questions he just got his ass into gear (can't blame him! he'd been waiting six years!).

Further it turns out he asked post transplant (on Tuesday) any info about the organ and all that they would tell him was that it was from a "fit" donor - no idea of sex, age, if it was an accident or what.

I sort of get the impression that at least here in Australia (and Wattle may like to comment now that she GOT THE CALL!!!) it's really up to the transplant team to accept an organ for you or not.. so you sort of have to trust if they've done any tests like HIV, Hep C and all that. I know I would ask at the very least when I got to the hospital, but who knows if you would be told or not.

I'm not saying I don't trust the team at my hospital to only accept an organ that is a good match for me or anything - it just seems counter to the way the US, for example, does it.

So that was interesting.

Turns out my hospital wound up doing 2 transplants that day, and another yesterday while I was in Dialysis!! That perked me up a bit. I think the universe is trying to tell me to hang in there and WAIT !! lol

[okarol]

I think many people in the US would do the same - they wouldn't ask much - they'd just go on in and hope for the best. People on this forum want ALL the info because they are aware that there have been cases where full disclosure might have influenced the decision on whether or not to accept an organ.

Richard - I keep watching for the day you post "I am on the road to transplant!" 

[Jessmomto3]

When I was first listed, I thought I should get my life in order and be ready whenever the "call" came.  Now, I don't even think about it. I keep my cell phone with me; I let the transplant co-ordinator know if I am going out of town - but for the most part, I just don't think about it.  It can consume you every thought and that will wear you out.  Ask questions, feel prepared and then go on living.    You always post good questions - makes everyone think!

YES!  and we were only activated for a month!  (on the list just over 9 months).

[RichardMEL]

I think many people in the US would do the same - they wouldn't ask much - they'd just go on in and hope for the best. People on this forum want ALL the info because they are aware that there have been cases where full disclosure might have influenced the decision on whether or not to accept an organ.

Richard - I keep watching for the day you post "I am on the road to transplant!" 

Thanks Karol!!! I will do my best to keep IHD informed!

It won't be a long road though - I live right across the road from the hospital. my bedroom window looks over at it (yeah, great view - NOT!!) 

as an aside I understand all 3 transplants done are doing well.. and that's the best news ever!!!! 

[okarol]

I know there's another thread somewhere started by Zach, but I cannot find it.
Adding to what's been mentioned below:

1 - What is the antigen match with me? (also ask about the antibody match)
2 - What is the cold time when I am called & location? (i.e. translates into travel time to get to my hospital)
3 - Cause of death?
4 - Donor's medical history?
5 - Donor's Age?
6 - Is this a ECD - Extended Criteria Donor? (if you have agreed to this type of donor)
7 - Has the donor been tested for hepatitis and AIDS?
8 - Is the donor positive for CMV or EBV?
9 - Is there any history of recreational drug use or substance abuse?
10 - Am I the first recipient up or a back up?

[rsudock]

this is very informative. my 1st kidney had EBV mismatch with me. unfortunately being a kid i didn't know to ask now i have to take acyclovir b/c of the EBV.

[RichardMEL]

In Australia they are bound to NOT tell you half of that stuff. I only found out (allegedly, not confirmed) the age and gender of my donor through a bit of hearsay and whispers rather than actually officially asking(which I did) and I was told they couldn't tell me. Indeed later I heard a totally different rundown of the donor (much younger) so I really don't know at this point. I suspect the only way I will find out more is when I write a letter to the family (planned for later this year) and if they feel like responding and telling me more about the wonderful person who, partly, lives on inside me.

[lawphi]

We were told the sex, age, cause of death and creatinine of the donor.  He had been in the hospital for two days and the kidney was coming from out of state.

We were told that the earliest it could happen was 18 hours away, but to be ready to leave they called and that the kidney was on a pump.  Sadly, it crossmatched and we were called after the back up was notified to come in. 

We didn't even ask about antigen match. 

[willowtreewren]

Thank you, Karol for directing me to this thread. This is exactly the one I was remembering.

 

Aleta

[Wattle]

I printed the questions out and they lived in my wallet until I needed them!

When the call actually came I was already at the hospital and had to consent without the help of my husband. Totally thrown, out came the questions and I let fly. It was funny as the head of transplants asked if I was a nurse. They don't normally get patients asking about the CMV/EBV status of the donor!

The only way to make an informed decision is to be informed!   

[willowtreewren]

I urge everyone to print these out NOW.

When I read these earlier, I thought that I would get "a round tuit" but never did. OKarol helped me find the thread because my brain wasn't working right in the middle of the night.

Print them out NOW! Do what Wattle did and keep them in your wallet.

 

[tyefly]

Will do.....

[okarol]

 

[Krisna]

I think many people in the US would do the same - they wouldn't ask much - they'd just go on in and hope for the best. People on this forum want ALL the info because they are aware that there have been cases where full disclosure might have influenced the decision on whether or not to accept an organ.

Richard - I keep watching for the day you post "I am on the road to transplant!" 

I asked!  And they told me.  But then I've been doing this a long time.  And I go to a pretty good transplant clinic!  I also know I am already CMV positive.  I contracted it while in the hospital for 3 months in 2002/2003 after my small intestine ruptured.

[SugarBear]

Just some advice as I just had a transplant on March 1, 2012.  I would have done two things, first pack a go bag for the hospital with whatever you consider essential.  I left a couple of things behind in my rush to get to the hospital.  Secondly, if you have hairy arms or a chest definitively shave those areas.  The constant tape pulling and ripping off hair of body hair had me wishing for a razor.  Especially as they were using just one of my arms as the left arm had the fistula and they want to preserve it.

[okarol]

I printed the questions out and they lived in my wallet until I needed them!

When the call actually came I was already at the hospital and had to consent without the help of my husband. Totally thrown, out came the questions and I let fly. It was funny as the head of transplants asked if I was a nurse. They don't normally get patients asking about the CMV/EBV status of the donor!

The only way to make an informed decision is to be informed!   

Good idea to keep in your wallet! 

[tito]

I was shocked when the call came this weekend. I had just been reactivated for two weeks.

Unfortunately the call came as I had just landed for a week's vacation in Florida (I live in Boston). The clinic had told me Florida was ok). I was told it was a good kidney, from a 67 year old woman who had died in in accident. Her creatinine was 1.0. They would do a biopsy, but I was told to get back in. So I hopped on the next flight back (my poor wife broke her ankle on the escalator, but that's another sad story). I got back to Boston, eight hours and $600 later.

After spending the night in the emergency room while they removed the kidney and biopsied it, I was told it was not a good kidney.
This is my first time that I had been offered a kidney. I know I'm near the top of the list now.

[okarol]

I was shocked when the call came this weekend. I had just been reactivated for two weeks.

Unfortunately the call came as I had just landed for a week's vacation in Florida (I live in Boston). The clinic had told me Florida was ok). I was told it was a good kidney, from a 67 year old woman who had died in in accident. Her creatinine was 1.0. They would do a biopsy, but I was told to get back in. So I hopped on the next flight back (my poor wife broke her ankle on the escalator, but that's another sad story). I got back to Boston, eight hours and $600 later.

After spending the night in the emergency room while they removed the kidney and biopsied it, I was told it was not a good kidney.
This is my first time that I had been offered a kidney. I know I'm near the top of the list now.

Oh tito, what a story. I am so sorry how it all unfolded. (I hope your wife recovers soon!)
The plus side is that you're on the radar, and hopefully another good match is in your near future.

[bwalkup1]

 

At my transplant center, they required that I attend a class prior to being placed on the transplant list. In this class they explained everything in detail.
Sadly usually the coordinator that calls you in will probably know very little about the kidney especially if it's from a cadaver. And even worse, medical information is protected and you may not ever find out what some people have suggested you ask. But they are all excellent questions to ask.

However, when I got the call to come in, I was told there were 2 kidneys coming to the hospital and I would get the second kidney as long as it passed inspection once the surgeon received the kidney. At that point after waiting so long, I didn't ask anything and got to the hospital..

I figured it would be best to report to the hospital instead of wasting a lot of time on the phone. I knew I would have plenty of time to ask anything I wanted once I arrived.

My advised would be, don't stress the call, just be prepared. Get a bag packed with whatever you need for several days. I was on PD dialysis when I got the call on June 25, 2012 and wasn't transplanted until around 430pm on June 26th.  If on PD you should ask if you need to bring any dialysis supplies with you.
In the class they told us to bring a 2 day supply, but when they called they said not to bring anything.

Needless to say I was more stressed out once I reached the hospital. I got there at 5pm and was told the kidney would be there at 10pm and by 1030 I should know if the kidney was acceptable for transplant. The nurses only knew that I was scheduled for surgery at 9am the next morning. I was going crazy the next day waiting, I wasn't taken to surgery until 4pm.

But thank God the kidney started working the minute they hooked it up and been going strong ever since.

You may want to speak to your transplant coordinator and find out before hand what information they will share with you about the donor.

The only thing I was told it was from a young person, disease free and it was a healthy kidney. 

[fearless]

I understand that the antigen match is significant:  what should it be?  What 's the best you can hope/ask/wait for?

What about antibodies?  What would be the exact question you would ask there?

thanks to anybody :-)