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

[sandra3105]

When i got call 17 nov 2011 after 6 yrs on list. 3 yrs PD but was to start home traing
Jan 12 haemo really hated that thought ! So call just expected a transplant most important question to ask  :2thumbsup;am i 1st or 2nd choice eh ? No one told me they call 2 people 1 is back up but luckily i worse 1st. No beds so on a trolley non renal ward arr 1.00 am all scans x rays done surgery 8.00 am got ready and was being wheeled to theatre when doc came down to me and said unfortunately kidney has jst decreased in numbers so no transplant devestated brought back to trolleu behind curtain. By 10.00 am rage setting in as day shift settling in until 12 noon i was now crying to them y no one cum t c me ? 1.00 pm renal dov arr apologised but the night shift told us both patients had left ok nusy these things happen but then said i need a potassium drip fr 1.5 hrs got home 3.30 pm 14.4 hrs an no kidney thought that was my chance went on downer (3weeks). Started training haemo 2months in got a call they ran the bi annual pool scheme an me an daughter 3 x way swap may 17th 6 months to the date. Had op kidney worked immediately few hick ups stent bowels etc... But now oct back at work took up swimming running. So message is alwsys b positive even at lowest level fate the cadaver kidney failed as live donor betta now worrying bit nout rejection dont think what ifs

[phyl1215]

I'm in Ohio and when I got the call I was told to get to the hospital asap they had a kidney for me.  I had 98% antibodies, I didn't ask anything.  I was later told that it came from Virginia and it was "perfect match", I couldn't believe it...it worked right away and Dr. said my body thinks it is mine.  I trusted my hospital and transplant team to do what was best for my case, they tried real hard to lower my antibodies without much success over 4 yrs., I knew they would take care of me.   

[okarol]

  Please share additional question suggestions, if you've got any. Thanks.

[Simon Dog]

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

6 antigens - best match 6/6, worse 0/6.

[MommyChick]

In all honestly when that call comes in, your mind kind of goes BLANK 
I had waited 8.5 years for that one phone call and when it finally happened all I kept saying was, is this for real !?!

The only question I could think of was if I was first for the kidney, which of course I was Thank Goodness. Otherwise all my other questions started to come to me as I was waiting in the hospital prior to transplant.

- like my antigen match? 6/6
- who and where it came from? I was only allowed to know the age of my donor.
- then the BIG question as to when is surgery, haha I was overly anxious for mine!

[Deanne]

I know this is an old thread, but it seems like it's still very relevant. When I was called, I wasn't given any information other than "It's a good match." I never learned the age, gender, or location of my donor. They would only tell me "it's a great match." My center doesn't use 1-6 antibody matches. They said antibodies aren't all created equally and the key antibody, the one responsible for rejection or acceptance, was a match, making the others much less important. Later, I commented that I assumed the kidney was likely a male because it's a large kidney. The transplant doc said I was probably right, but he didn't know. Kidney size is related to height, so it was likely from a tall person. That's the most I ever found out.

[Simon Dog]

Is the kidney CMV + or - (only relative if you are CMV -)

What is the KDPI of the offered kidney?   (lower is better, you will not get <= 20% unless your EPTS is in the top 20%).    Understand what this number means before you get the call, and have a conversation with a nephrologist who is not on the transplant team to get a good idea as to how high a standard you should have.     I know I would accept a 21% KDPI, and decline an 85% KDPI organ - but have not yet figured out where the cutoff is.    Plenty of time to figure that out before my number comes up.  Once you hit age 54, no amount of "goodness" in other factors (diabetic status, time on dialysis, previous transplants) will give you an EPTS under 20%, so no soup for you.  (actually "No kidney with a KDPI under 20% for you")

[MooseMom]

Is the kidney CMV + or - (only relative if you are CMV -)

What is the KDPI of the offered kidney?   (lower is better, you will not get <= 20% unless your EPTS is in the top 20%)

These are great questions, but when that call comes, I don't know how many of us would think to ask them, especially if you are doing your grocery shopping or are picking up the dry cleaning when the phone rings.

[Simon Dog]

Is the kidney CMV + or - (only relative if you are CMV -)

What is the KDPI of the offered kidney?   (lower is better, you will not get <= 20% unless your EPTS is in the top 20%)

These are great questions, but when that call comes, I don't know how many of us would think to ask them, especially if you are doing your grocery shopping or are picking up the dry cleaning when the phone rings.

Nobody will think to ask these questions if they are not prepared.    The better equipped you are to talk to the MDs using their terms, the better information you will get.    A lot gets lost in the translation when doctors "simplify" explanations for patients who cannot understand the terminology.

You can calculate your EPTS score at http://optn.transplant.hrsa.gov/converge/resources/allocationcalculators.asp?index=82.    Remember, the only thing that matters for allocation is "is you score 20% or lower".  If yes, you are in line for choice meat if it becomes available.   If not, and a choice organ comes up, you will be bypassed on the list in favor of someone with a better EPTS score and only get the organ if nobody behind you on the list is a match with an EPTS <= 20%.

[Simon Dog]

Forgot one: It is a high risk donor?

[iolaire]

You can calculate your EPTS score at http://optn.transplant.hrsa.gov/converge/resources/allocationcalculators.asp?index=82.    Remember, the only thing that matters for allocation is "is you score 20% or lower".  If yes, you are in line for choice meat if it becomes available.   If not, and a choice organ comes up, you will be bypassed on the list in favor of someone with a better EPTS score and only get the organ if nobody behind you on the list is a match with an EPTS <= 20%.

new link: https://optn.transplant.hrsa.gov/resources/allocation-calculators/epts-calculator/

[jonah]

I am not sure why you would want to know "cause of death". My drs. at 2 hospitals said, "the only question you need to ask is: "if you were my younger/older brother, would you recommend I take it?" The Dr. has to offer you a viable kidney, but if you make the question personal may also give a subjective answer that has already incorporated any questions you have. That makes sense to me...

[OneForTheBirds]

I knew the kidney was tested for everything but I made sure to ask anyway.  It was negative for every disease it was tested for.  I could tell from the voice of the caller that this "extended criteria" kidney was going to be a good one.  My doctor said this was the highest performing cadaver kidney they've seen in the past 5 years, and they make 200 transplants a year.

[Simon Dog]

I knew the kidney was tested for everything but I made sure to ask anyway.  It was negative for every disease it was tested for.  I could tell from the voice of the caller that this "extended criteria" kidney was going to be a good one.  My doctor said this was the highest performing cadaver kidney they've seen in the past 5 years, and they make 200 transplants a year.

Just ask the KDPI score.

[okarol]

I am not sure why you would want to know "cause of death". My drs. at 2 hospitals said, "the only question you need to ask is: "if you were my younger/older brother, would you recommend I take it?" The Dr. has to offer you a viable kidney, but if you make the question personal may also give a subjective answer that has already incorporated any questions you have. That makes sense to me...

There have been problems in the past when people were transplanted with organs from donors who had "unexplained fevers resulting in death." In one case the donor's organs passed on rabies.

[Simon Dog]

"extended criteria" kidney was going to be a good one.  My doctor said this was the highest performing cadaver kidney they've seen in the past 5 years

It strains credibility to consider a extended criteria (obsolete term, now it's KDPI > 85%) kidney would be "one of best cadaver kidneys they ever saw".  Just doesn't make sense.