The I received a call but it didn't work out thread

[iolaire]

This thread is a place to mention I received a transplant call but it didn't work out for some reason.  The idea being its its a stressful event and nice to mention without starting a whole new thread.

edit 2018 changed:
"This thread is a place to mention you received "
to
"This thread is a place to mention I received "

[iolaire]

Today wife received a call for me well I was commuting on Metro underground.  She had to give an immediate Yes or No without talking to me, of course she gave the Yes.  Late 50's donor with no major problems other than some superficial cancer.  One odd thing she was told is that it had been on ice for three day!  Had it progressed I would have asked more about it.  She was told we would get a call back but I'm primary.  After she picked me up I started making a list of travel and person stuff that she would need to deal with if I'm out of commission.  But we received a message on our home phone (via email) because we were still out of a call back that the surgeon looked at the biopsy and said it was no good so no one would get the kidney.

So close call, it was nice because it sounded very immediate and less time to stress out.  Other calls made it sound like I would have to wait all night, lily not sleep and go in burned out, instead I would have headed in at say 9 PM fairly calm after a day at work.  I did wonder a bit that it was an "older" kidney with me just at 41 but if its good its good. 

Its the first call I've received under the new system, my last call was about exactly one year ago for an extended criteria kidney.  Because of the new system I no longer receive extended criteria kidneys.  Its nice to know that I'm on top in some fashion.  I think was added to the list in August of 2001.

[iolaire]

I received another call on Friday.  Thursday and Friday were busy at work with our CEO telling higher ups that something needed to happen immediately, and I'm personally responsible for the SQL code for half making it happen. 

So after working until 9:30 PM on Thursday, it looked like Friday would be another late night so I rescheduled dialysis for Saturday.  Then a bit later in the Morning, maybe 11 am, I got the call for a local deceased donor.  It was for a good quality kidney with a KDPI in the 40% (good) range (not knowing what that was I was told that 85-100 reflect a kidney that likely would last for a short time), no diabetes, but a history of drug use including heroin.  I would be the alternate, and they get the donor this afternoon, so no eating and drinking after 2 pm.

Usually, the wait after these kidney calls are very stressful, since you are just waiting for more information.  However, this time I had work to do to prepare the patch I was running and I also felt the need to document what I was working on...  So I continued to work, documented my part of this project - since I'm really the only one who really understands my part of the project and the SQL code behind it - and additionally I'm not part of the product development group so there is the added stress of them not understanding my processes and needed to support my code if I was out.  So this time went easier, but still it's stressful, partially just due to work logistics and having to help things flow smoothly if I was out. Generally, you don't feel like telling work people about a kidney call since it might not happen.  I did decide to talk over some end of the quarter processes with my one direct report incase I ended up out next week.

Later, at about 4 PM or so, I got my call back, still no cross match because they did not have enough donor blood.  They didn't have the body so everything was postponed, transplant would happen in the morning, so now it was ok to eat dinner and drink, but cut that off at 7 pm.  If a call was to come in, it likely would be in the morning, not the night.  Also, I found out that I was the third alternate, another hospital got first dibs, and at my hospital another person was ahead of me.  There was only one kidney because the second went with the liver to a kidney and liver transplant person.  So more waiting, but still working and focused on other things.

Then, at about 8 PM, I received another call to tell me that I'm now the first alternate (#2).  Also, to confirm that I would accept the kidney, since it was classified as high risk, and to share that the donor died from an intravenous heroin overdose.  As before, I confirmed that the blood work looked ok on the blood borne diseases and it was ok, so I confirmed that I would accept the kidney (happily) and would sign accepting the higher risk kidney should I get it.

As I was still working and talking to two executives about the rush project, I felt I needed to warn them about the kidney and explain my documentation should I disappear in the AM.  That was good because it helped a developer executive to know the code base that I support.  A bit after that I finally headed home and met up with my wife, and tried to wind down, which was fairly easy because of the two long days.

Saturday, I woke up late at about 9 am, and needed to get to dialysis at 10:30-11 AM.  I had not received a call, and I was still supposed to be fasting and not drinking. So I called the coordinator to check on the status, she had not received her call so she needed to call in and call me back (quickly).  After about 30 minutes, she called back to tell me both kidneys were transplanted (! good !) and I was not needed, sorry it took so long, she had a hard time reaching someone to update the status.

So thank you to the donor and the family (if the were involved in the decision), both kidneys and a liver were put to good use.  It was not my time, but this was only two months since the last call in late July so I'm close...

[Simon Dog]

KDPI in the 40% (good) range (not knowing what that was

Every potentital xplant recipient should familiarize themselves with KDPI and KDRI.   

A good place to start is: http://optn.transplant.hrsa.gov/converge/resources/allocationcalculators.asp?index=81

You don't want to be figuring this out when you get "the call".   I am too old to score in the top 20% of recipients (nobody over age 53 can), so I cannot get deceased donor with a KDPI under 20% unless nobody else wants it.

[smartcookie]

I am so sorry you didn't get the kidney, iolaire! That has to be heart breaking. You always have such a good outlook on life. I can't imagine being passed up again. I would be so frustrated.

[Zach]

… no diabetes, but a history of drug use including heroin.

An IV drug user?
I'm not sure this would have been a good choice for you in any case.

[iolaire]

… no diabetes, but a history of drug use including heroin.

An IV drug user?
I'm not sure this would have been a good choice for you in any case.

I'm ok with that, trusting the testing they do.  There is a small chance that they could be infected very recently so testing doesn't find the issue, but that's low.  I guess its a risk I'm willing to take.

[iolaire]

Today I have another update on my experience waiting for a cadaver kidney from the kidney transplant list.  I've been listed since August 2011.  To date dialysis is very manageable so I've been fine waiting for the cadaver kidney.  I think dialysis is low stress for me for two reasons, first my kidneys are in slow decline and I have some remaining kidney function, including urination, so my kidneys are helping out a bit, plus I'm overall very healthy so I'm not dealing with other medial issues in addition to dialysis.

Five months after the last kidney call I receive another call on Saturday morning.  For the second time I was an lower level alternate for a heroin overdose kidney with a GREATE KDPI  of 12.   This one had additional risk factors of recent prison time. But it was a good quality kidney and good creatine from a younger person. 

KPI is a score of estimated kidney quality based on the donors age and other risk factors like diabetes, as a patient I have my own score which is about 30, which means I qualify for the kidneys that are about 30.  So by accepting a kidney with higher risk factors, I have access to a donor that has a potentially much better kidney.

I'm willing to take the risk on a high risk kidney because they have good testing for the blood borne illnesses (HIV, Hepatitis etc..), there still is a risk if the donor was infected very recently, but its low.

On Saturday morning at at 8:00 I received the call, heard information on the donor and agreeded that I'd like to proceed and that they could start the cross match.  At that point I was the third alternate.  I had fairly high hopes because in September I was alternate on another heroin overdose kidney and I moved up into the primary alternate position.

As an alternate the instructions are to hang out and do not eat.  But the coordinator asked if i had breakfast, and since I only had a cup of coffee she told me to have a light breakfast.  So I eat a small bowl of oatmeal and started waiting.

I try to not get stressed about waiting on for a kidney transplate, but when you get the call it become very stressful due to the waiting and lack of communication.  This wait was long and quite as always.  I heard nothing through lunch so at 2 PM I called in to check and received instructions to continue to wait for a few hours and not to eat. 

Generally what happens is they harvest the organs (or try to coordinate the donors in the OR with harvesting), and then they need to prep the recipients and then do the transplant.  At any point they might decide they don't want to put the organ in the recipients.  They might do lab work and stop the transplant, or even open up the recipients and see something they don't like and stop the transplant.  I've heard of situations where the donor kidney is warmed up and they call in the alternate for a rush procedure because the primary person's transplat is canceled once they have been cut open. For that reason the alternates are standing by until the transplant is completely

A few hours later I eat two tomato sandwiches and thought my chance at the kidney had passed. But at 5 PM I was called and told to keep standing by!  The kidneys were at GW and Georgetown for transplant but I'd still be an alternate until it was complete.

At 8 PM we were going to a play with Susan's mother Anna who is down for Easter. So again no food for me.  At 7 PM I called into check and make sure I was still waiting, and I was.  I told the coordinator I'd be out of touch for the 1.5 show.  And she said I should call in when I'm out or she would leave a message.  So no drinks before the show, and no dinner either.

We watched Romeo and Juliet at Synetic Theater in Crystal City.  Synetic does "silent" Shakespeare through music and dance (physical theatre).  We user at Synetic so this was the second time we saw the show and it was very good as always.

Once we were out of the show I check our VM and there was no call.  So when I returned home I got ready to call the coordinator and saw a VM that came right after we exited the theature.  Both kidneys were transplanted...

So I'm waiting again, and am thankful to the families of the heroin overdose patient who allowed the organs to be transplanted.

[cassandra]

Sorry iolaire but beautifully told story. It made me feel hopefull till the end.


       


Good luck and love, Cas

[justagirl2325]

Seriously stressful, sorry it didn't work out for you. 

[Simon Dog]

KPI is a score of estimated kidney quality based on the donors age and other risk factors like diabetes, as a patient I have my own score which is about 30, which means I qualify for the kidneys that are about 30.  So by accepting a kidney with higher risk factors, I have access to a donor that has a potentially much better kidney.

I welcome corrections if any of this in error, but my understanding:

1. Your score is "EPTS" (estimated post transplant survival).  You do not have a KDPI as a recipient.

2. The only EPTS differention is 20.  If you EPTS is <=20, you qualify for all kidneys,.   If your EPTS > 20, you only qualify for kidneys > 20 (ie, 20.00001 - 100).  The only exception is of no person with a sub 20 EPTS who matches a sub 20 KDPI kidney is available and accepting, the kidney is released to personw wiht EPTS > 20.

There is no additional differentiation.   A person with an EPTS of 30 is in equal standing with a person with an EPTS of 80, so I respectfully disagree with the statement that your score of 30 means you qualify for kidneys around 30 on the KDPI score.

Like I said, corrections welcome.

Holy Crap - a 12.  Sorry it didn't work out for you.

[iolaire]

A person with an EPTS of 30 is in equal standing with a person with an EPTS of 80, so I respectfully disagree with the statement that your score of 30 means you qualify for kidneys around 30 on the KDPI score.

A majority of your feedback is likely right.  Kdpi was a simplified summary for Facebook.

However I thought under the new system lower life expectancy kidneys would be offer to people with a low life expectancy?  So shouldn't the 80 kidneys go to someone with say a 60+ range not 20?  If not how would any be offered to patients with a shorter life expectancy?  To date I've been offered as an alternate a 40 and a 12 so that's closer to 30 than say 80.

[Simon Dog]

[
However I thought under the new system lower life expectancy kidneys would be offer to people with a low life expectancy?

They are, however, my understanding is that is simplified to "under 20 qualifies for under 20; over 20 gets an over 20 kidney".

As to "shouldn't...." - I was talking about how things do work; no editorializing on how they should work.

As a secondary factor, transplant teams may choose not to offer high number kidneys to patients they feel are too young and/or doing too well on dialysis to justify a short half-life replacememt kidney.

Your posts illustrate a serious problem with the system - patients are not being given full information about how EXACTLY EPTS and KDPI are used for allocation unless they choose to do their own digging or ask the right questions.

[iolaire]

In June well in Brussels I received a call that I missed. Called the poor coordinator back very early in the morning because I woke up and was thinking Brussels time and that the cull was recent.

[iolaire]

Yesterday received a call.  Several people were ahead of me and I was a backup.  Was interested - yes near perfect offer.  24 year old with a KDPI of 3 but high risk based on social history.  I don't know if that means high sexual activity or that the donor was gay, regardless yes I'm interested. The coordinator went in to explain the testing that they do lower risk from high risk donors. 

Pervious calls they have told a bit more, like cause of death. I felt like less donor information was given this time, don't know of that was because it was a different coordinator or what.  I asked about the timing for transplant and she didn't know but since I was down on the alternate list I didn't need to stop eating.  The donor was not yet in the ER so maybe they were still under life support.

Now 20 hours later with no additional calls I have to assume someone received a great quality kidney.  My EPTS is 14%.

As always thanks to the donor and family for offering their loved one for donation (or themselves).

[kickingandscreaming]

That's so tantalizing.  So near and yet so far.

[Simon Dog]

The surgeon I am listed with told me that the risk of "high risk" is very low.  A newer form of testing (nucleic acid) allows detection of HIV infection within a few days rather than waiting a few weeks for the seroconversion process to take place.

[iolaire]

Life on the kidney transplant list update February 19th, five months after the last call, five and a half years on the wait list.

4 pm on Saturday got a call for a kidney of the 27 year old female who passed away due to an overdose and thus was a high risk kidney.  Due to the donors age and medical conditions the kidneys were rated at a of 19 KDPI which means it was a great offer. They had some other information on the quality of the kidney when the donor arrived at the hospital (creatine 1.8, i.e. not in the best condition) and then later (creatine 0.8 = prefect).

At the time of the call I was the second alternate at my center.

We had a dinner reservation at 6:30 so headed out to dinner with friends and at that time I received a call with timing of when the kidney would in the AM so no food after midnight.  And even better at that time my hospital was getting both kidneys so it looked like I would be the one to receive the second kidney!

Also learned that the harvesting of the organs would take an hour or so but then the various tests on the organs take another few hours.

However after a nice dinner, we returned home and received a voice mail to say that two patients in other centers that needed either a Liver or a Pancreas jumped ahead in line.  Basically those patients who need a pair of organs get priority - as they should be since not getting a Liver is a death sentence as compared to needing a Kidney (where we have dialysis as a backup).  And its best to do the transplant for both organs at once.

With that bad news I jumped to the fourth postion of the pair of kidneys.  Still no food after midnight.

5 am Sunday received a call to tell me that the harvesting of the organs was pushed to about noon so I could eat breakfast before 8 am.  I wanted to sleep and didn't get up to eat at 7 am.  But that was not that great a choice since I'd not know if I could eat until after 3 PM. 

But the final confirmations that the organs were good and going to patients needing pairs of organs didn't come until after 5 PM!  But on the plus side the donor's donations were well used on patiens who had immediate needs for life saving.

Thanks to the donor and/or family who choose to share the organs.

[Michael Murphy]

Good things come to those that wait. BS, but I personally hope you get your kidney soon. However I will mis your reporting on you dialysis trips, they always allow me to get a charge since I am married to someone who hates travel.  But I will give up my pleasure when you get your kidney,  as much as I like you trip reports I am always happy when someone graduates from dialysis.

[SooMK]

I've learned from IHD that once you get one call you are getting close to "the" call. The roller coaster these calls put you on seems unbelievably difficult. And over 5 years wait time! I hope this will be your year.

[tigtink]

That's frustrating but at least it tells you that you are getting close. I hope you get another call very soon.

[iolaire]

I've learned from IHD that once you get one call you are getting close to "the" call. The roller coaster these calls put you on seems unbelievably difficult. And over 5 years wait time! I hope this will be your year.

I'm willing to get higher risk kidneys, i.e. Overdose kidneys (not bad kidneys just higher risk) so I've actually received calls periodically since thanksgiving 2013 just before I started dialysis but this was the first time that for an hour or so I was assigned a kidney. Usually I'm a fairly low level alternate. So hopefully that means I'm close now.

[PrimeTimer]

You certainly have a good attitude. If these kidney calls stress you out you certainly aren't showing it. Hopefully the next call comes soon and it will be yours.

[Hootie]

We all hope you are close! Its life transforming when it happens in a very, very, positive way!

[iolaire]

Life on the kidney transplant list update February 19th, six days after the last call, five and a half years on the wait list.

I’m starting to wonder if my center was able to prioritize me once they got a request from GW transplant program for my records.  I finally responded to my wife suggestions to start the process to move my time to GW so I’m at a metro accessible center rather than the center in the suburbs.  It seems interesting that a few weeks after I started that process I received two calls. But it could also be timing, I’m right about at the average wait time.

Yesterday (Thursday) received a call on a great kidney at 11:05 am, 16 year old car accident victim, KDPI of 16.  This time was number 5 on the list, with the top three being pediatric patients.  I’m guessing since it was not “high risk” it was considered for pediatric transplanting where Saturday’s call was high risk and something the might not want pediatrics to get.  The one qualifier is the pediatric surgeons are VERY strict with what they are willing to transplant so they turn down kidneys often, leaving the chance for me to move up to the top.

As always the initial call is basically are you interested and are you willing to approve them starting the cross match on the blood I send to John Hopkins each quarter.  Of course my answer was Yes.

This call came in at the start of a daily Video Conference so I explained to the team the realities of the fact that I might not be in for roughly 20 days after the transplant at the minimum…  It was a good reminder since my one direct report left and we are not replacing that position, so few people know exactly how to preform my job (sorry Carolyn I’m sure they will need to ask you for help…)  It also helped to communicate why I need to train others to do my job function.

The coordinator didn’t know if they would harvest the organs in the PM or AM on Friday.  A few minutes later she called back to get my last dialysis session and where it is, that’s a standard question she overlooked in the first call.

Next call at 8:27 PM, still backup, no food or drink after midnight and she would call back with an update from 8 am to 8:30 am.

8 AM on Friday the coordinator calls me back to say I was released from backup and thus could eat and drink again.

So good news and other call came in, and I didn’t have to not eat or drink all day Friday.