Pre-emptive cadaveric transplants

[MooseMom]

Is it fair for someone not yet on dialysis to be waitlisted and offered a pre-emptive cadaveric transplant?

Should someone have to be on dialysis to be "worthy" of a transplant?

[okarol]

Fair? It's based on matching. Pre-dialysis patients who get a pre-emptive deceased donor transplant are the "one-in-a-million" perfect matches that trump everything.
I used to wonder about that. I pray someday anyone who wants a transplant never has to experience dialysis.
Recipients are not receiving organs because they are worthy. It's not in the formula.
If it were many folks might not get them.
Someone might also say that living donors should not donate to the person they intend to, but should donate to the list of people waiting to benefit those waiting the longest, especially those who have no living donors to bring to the table. What do you think of that?

[okarol]

Oh, and never use the term "cadaveric" around anyone from the NKF if you do not want to get chastised! I was told years ago that it's insensitive. I thought it was a medical term. Silly me.

[MooseMom]

I have just been told that in Australia, you must be already on D to be listed for a deceased (is that the acceptable term?)  donor kidney and that you can be pre emptively txed only if you have a live donor.  This made me feel horrible, that  I am being selfish and am taking away something from someone and that I am "less than" because I have no living donor.  But I guess it does not matter because I am in the US, and the guidelines I have to follow are the one established in this country.  Still, I feel really awful.   Maybe I should not accept a kidney until I have spent a couple of years on D...you know, until I have paid the price?

[willowtreewren]

Carl's neph tried to get him listed for a preemptive transplant. Dialysis was inevitable for him. Remember, transplant is just one type of treatment.

Unfortunately, the SW at the transplant clinic gave Carl incorrect information, which delayed his getting listed by 8 months. It is all water under the bridge now, but at the time, quite upsetting.

Aleta

[Poppylicious]

I have just been told that in Australia, you must be already on D to be listed for a deceased (is that the acceptable term?)  donor kidney and that you can be pre emptively txed only if you have a live donor.  This made me feel horrible, that  I am being selfish and am taking away something from someone and that I am "less than" because I have no living donor.  But I guess it does not matter because I am in the US, and the guidelines I have to follow are the one established in this country.  Still, I feel really awful.   Maybe I should not accept a kidney until I have spent a couple of years on D...you know, until I have paid the price?

As far as I'm aware the guidelines about transplantation are the same in the UK (as Australia).  If you're in the States, you follow their guidelines ... simples!  Don't feel awful.  And more to the point, haven't you already paid a price, in terms of how you've been living your life to date?  I think that makes you more than deserving. 

[Rain]

In Canada in order to get a cadaver kidney, you have to be on dialysis.  You could get all the tests done before, but you only become active once you start dialysis and your clocks starts.

You could get a living donor transplant done before dialysis, which was what i was trying to do, but my father found out he had his own kidney problems and couldn't donate.

I am glade I went on dialysis, since I learned to appreciate life more. 

[monrein]

MM, you must NOT feel awful...each of us here, despite how untrue this might feel much of the time, is incredibly lucky that we live where we live and have D and trx available to us at all.  Many people in the world just die.  Nothing is particularly "fair" in life it seems to me and I think we just have to get on with coping the best we can.  You're in a system that gives you a chance at a bit of a break and it's a system that has its shortcomings as well.  You absolutely "deserve" a preemptive if it comes your way and I hope it does.  The deserving business is highly overrated IMO...bad things happen to good people and vice versa.  Religion can sort this out for some folks and make it all seem like a plan but one way or the other it still comes down to dealing with the fact that not much is really fair.  What we each can and ought to do is treat our bodies and organs with as much respect as we can muster, whether it's dialysis or trx that keeps us around.   

[MooseMom]

I am glade I went on dialysis, since I learned to appreciate life more.

I have done volunteer work throughout my life, all for people with all kinds of medical problems, so I don't need to go on dialysis to appreciate life.  I do not need to suffer in order to learn how to be compassionate or empathetic.  I do not need illness to teach me how to be kind.  I am certainly no saint, but I do not need to be taught these particular lessons in this particular way.

Okarol, I guess I can understand the idea that living donors should give to patients who are in most need and that family ties should be irrelevant.  But I don't think that is fair.  I personally am grateful for any living donor giving to anyone, and I am certainly not going to judge anyone in that regard.  No, I don't like that idea at all.  Still, I think that altruistic donors who are willing to give to a stranger are particularly special.

Poppy, yes, I've paid a big price already...thanks for reminding me of that.  Anyone who is living with CKD pays a price.

Monrein, thanks for that.  I don't make the rules here in the US, so I am not going to feel bad for something over which I have no control.  Well, yes...I probably WILL feel bad for quite some time.  I am uncomfortable with the whole concept of quantifying "suffering".

[cariad]

MM, what's going on here? Are you all right? I think we all worry about you when you do this to yourself.

Far, deserving, I have major issues with anyone who tries to engage in that calculus. When we talk about these things, it implies to me that it was fair that we went into kidney failure to begin with, that we all deserved this at the start. For only by it being fair that we were in kidney failure can we speak about who deserves to get out. Do people who never face organ failure deserve that more than us?

I absolutely detest comparing suffering, but your question does rather force it. What you seem to be asking is Have I suffered enough? Have I suffered as much as someone who spent years on dialysis? There is no answer. You no longer inhabit a world of fair and deserving, in that way you are very much through the looking glass. In the realm of chronic illness, those are nonsense words, so throw them out. Take whatever chance the universe affords you to avoid dialysis and give a great big smack to anyone who might dare to say you are unworthy (an extra one from me, please).

I don't think Rain was saying you needed to learn to appreciate life. I read that as this was what she finds/found positive in spending time on dialysis. It's true that there is no happiness without sadness, and I think if we can see the deep troughs as a way to enjoy the peaks more, then that is to be applauded. Gwyn and I had just a disastrous first week or so in England together. Everything that could possibly go wrong seemed to do so the moment I arrived. I've never laughed so hard in my life. That is still what I love about him most - when things go wrong, he will find the humour in it if it's the last thing he ever does.

Oh, and Australia won't have us, so they can kiss my them and their kidney allocation. (Settle down, Australians. It's a joke.)

[MooseMom]

http://forums.homedialysis.org/showthread.php/3239-How-dangerous-is-the-initiation-of-dialysis?p=21888#post21888

This pretty much explains it.  I asked a question and was a bit floored by the response.  It's probably just me.

I myself never asked if I have already suffered enough, but Dr. Agar, in his explanation of why I wouldn't be eligible for a pre-emptive cadaveric transplant, made me wonder what IHDers already on dialysis and awaiting a transplant might think.  Do they think I am somehow stealing from them?  Do THEY think I am not deserving until I have to start dialysis?

[ToddB0130]

If your GFR has become low enough to get placed on the list in an active status,  then you totally qualify should your perfect kidney become available.   My understanding is that if it were the perfect kidney for multiple patients,  they might look further to make a decision about which patient might get it (but I don't know how often they're exactly perfect for two people....)

I join many others in sincerely hoping that your call comes before you have to start dialysis at all.  Having read a number of your posts,  it seems you've worked long and hard to keep dialysis at bay and you've earned the transplant opportunity !  The choice of going on dialysis comes from you making the decision with your medical team that it is time.  If you've been able to successful delay it and are feeling healthy overall,  then you shouldn't be 'punished' for not starting dialysis earlier than someone else.

Just my opinion .... fret not,  friend !!!

[okarol]

A couple thoughts:
Discussing the way it is in Australia is fine, if you plan to move there. Otherwise it's comparing apples to oranges and doesn't seem to help much.
I know one IHD'er who received a deceased donor kidney without ever starting dialysis. I remember being shocked, but did not know that she had a very high antibody level and was undergoing plasmapheresis to lower her PRA, as she had a living donor who was in the process of completing her evaluation, when the match came in. I think we felt more envious than anything, but I never thought it was unfair.
You're getting calls because you've opted to accept an extended criteria donor. Many patients waiting are not willing to take them. So being worried about stealing a chance from them also seems like fretting over something that does not apply.

[MooseMom]

Yes, you're right, Okarol.  What happens in Australia stays in Australia.

Thanks, Todd...I'm going to stop fretting now.   Like everyone else around here, I'm just doing the best I can.

[okarol]

 

[Hemodoc]

The overwhelming number of preemptive transplants even in the US are from live donors. With the number of renal patients on the wait list, bumping ahead is just not anything but a  most rare event. In such, it is not a realistic consideration unless you are looking at extended criteria. In reading over Dr. Agar's response, he was first of all disputing the assertion that dialysis is dangerous. I agree, when done properly it is not.

As far as the extended donor criteria, Dr. Agar was simply representing the fact that these transplant can be problematic in many patients with higher rates of failure, higher hospital admissions and the need to redo the transplant sooner. Some state that the risk is worth being off of dialysis with better survival, but that is comparing EDC to conventional in-center dialysis.

Expanded criteria donors (ECDs) and donation after cardiac death (DCD) provide more kidneys in the donor pool. However, the financial impact and the long-term benefits of these kidneys have been questioned. From 1998 to 2005, we performed 271 deceased donor kidney transplants into adult recipients. There were 163 (60.1%) SCDs, 44 (16.2%) ECDs, 53 (19.6%) DCDs and 11 (4.1%) ECD/DCDs. The mean follow-up was 50 months. ECD and DCD kidneys had a significantly higher incidence of delayed graft function, longer time to reach serum creatinine below 3 (mg/dL), longer length of stay and more readmissions compared to SCDs. The hospital charge was also higher for ECD, ECD/DCD and DCD kidneys compared to SCDs, primarily due to the longer length of stay and increased requirement for dialysis ($70 030, $72 438, $72 789 and $47 462, respectively, p < 0.001). Early graft survival rates were comparable among all groups. However, after a mean follow-up of 50 months, graft survival was significantly less in the ECD group compared to other groups. Although our observations support the utilization of ECD and DCD kidneys, these transplants are associated with increased costs and resource utilization. Revised reimbursement guidelines will be required for centers that utilize these organs.

http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2007.01993.x/abstract

His point was you might be better to wait for a standard criteria donor to get a transplant that will last longer. With the home dialysis that you have expressed interest, survival approaches that of cadaveric transplant.

Bridge to Transplant

Among patients on nocturnal dialysis, there were 26 deaths (14.7%), compared with 76 deaths (14.3%) among deceased-donor transplant recipients and 45 deaths (8.5%) among living-donor transplant recipients.In a multivariable analysis, there was no significant difference in risk of death between patients on nocturnal dialysis and recipients of a deceased-donor transplant, while recipients of a living-donor transplant had a significantly higher survival rate.

We know that patients who are on conventional dialysis do worse in terms of survival than patients who get transplanted, Dr. Pauly said.We also know that the longer you're on conventional dialysis before you ultimately receive a transplant, the worse your outcome is from the transplant, and so one of the kind of tangential implications of this study is that possibly nocturnal dialysis may be a better bridge to transplantation than conventional dialysis.The results can also be used to aid medical decision-making, he added.It provides more information for patients and their caregivers to make a balanced decision between different treatment modalities.We always tend to say you should get a transplant; that would be great. But the reality is not everybody is a good transplant candidate, and this just gives a little more information about a very good alternative for patients who may not be ideal transplant candidates or who may not be transplantable because maybe they've had a history of cancer or they may have other prohibitive medical comorbidities or because they're highly sensitized.

http://journals.lww.com/nephrologytimes/Fulltext/2009/08000/Survival_Rates_with_Nocturnal_Hemodialysis_Similar.1.aspx

So, not sure that I would take Dr. Agar's comments as negatively as it seems you have done. There are risks to every treatment choice. EDC has the highest risks for transplant patients. In addition, the death rate in Australia for dialysis patients is significantly lower than here in the US. From his perspective at your relatively young age, with home, nocturnal dialysis, he simply questioned your decision to go with a preemptive EDC transplant. At present, we don't have studies comparing nocturnal dialysis to EDC transplant which is really the answer you are looking for. However, you can compare absolute numbers and it is possible that you might actually do better with nocturnal dialysis than with EDC transplant. Sadly, no definitive data at this point to state for certain which offers the best survival at 1 5, 10 years.

Ultimately, the choice will be yours and your medical team. Some folks wish to avoid dialysis, others are frightened by the transplant meds. It all comes down to personal preference in the end.

Hope this helps,

God bless,

Peter

[MaryD]

I think the word which applies in Australia would be "needy" rather than "worthy", when it comes to transplants.

Someone who is already on dialysis would NEED a transplant more than someone who still has some kidney function.

I was astonished to find that there were non-donor pre-emptive transplants in US, when I started browsing through this forum.  I thought I must be misunderstanding what I was reading.

I still think I am living in right place for dealing with kidney faliure.

[MooseMom]

I appreciate that, Hemodoc, and I think I understand what Dr. Agar was trying to say.  I plan to do NHHD precisely because I want to be as healthy as possible for a transplant, but I think what concerns me is that period of time between the very first day I start dialysis to the very first night I dialyze nocturnally.  I won't be able to just immediately start NHHD...there is a transition period that will mean that for some time, I will have to dialzye in a clinic, to their schedule and to their rules and regulations.  I wish I could just magically start on NHHD and have great success like, say, Desert Dancer, but as it stands now, my clinic doesn't "do" NHHD, so from the beginning, I'll have a fight on my hands. 

So while I do understand that optimal dialysis is the best bridge to transplant, that doesn't mean that I will have quick and easy access to it.

After hearing from several people who have been generous enough to share their thoughts with me, I am leaning more toward not accepting an EC kidney at this time.  I will keep my name on the EC list, though, so that I have the option available should my condition swiftly decline.  Thank you very much for your post.

[MooseMom]

I think the word which applies in Australia would be "needy" rather than "worthy", when it comes to transplants.

Someone who is already on dialysis would NEED a transplant more than someone who still has some kidney function.

I was astonished to find that there were non-donor pre-emptive transplants in US, when I started browsing through this forum.  I thought I must be misunderstanding what I was reading.

I still think I am living in right place for dealing with kidney faliure.

Is it true, though, that someone on dialysis NEEDS a kidney more than someone with, say, an egfr of 10 and is really struggling?  When I met our member, Desert Dancer, at the IHD meetup in Vegas, I knew that she was doing nocturnal home hemo, and she was certainly healthier than me!  So, does she need a kidney more than I do?  Who gets to decide this?  Who gets to define "need" and then quantify it?

[okarol]

I think the word which applies in Australia would be "needy" rather than "worthy", when it comes to transplants.

Someone who is already on dialysis would NEED a transplant more than someone who still has some kidney function.

I was astonished to find that there were non-donor pre-emptive transplants in US, when I started browsing through this forum.  I thought I must be misunderstanding what I was reading.

I still think I am living in right place for dealing with kidney faliure.

Is it true, though, that someone on dialysis NEEDS a kidney more than someone with, say, an egfr of 10 and is really struggling?  When I met our member, Desert Dancer, at the IHD meetup in Vegas, I knew that she was doing nocturnal home hemo, and she was certainly healthier than me!  So, does she need a kidney more than I do?  Who gets to decide this?  Who gets to define "need" and then quantify it?

No one gets a kidney based on need, or level of sickness. Need only applies to liver, heart and lung transplants. Because there is no equivalent of dialysis, the sickest people are in line for the precious organs (but not TOO sick, or you do not qualify as being able to successfully survive the surgery.)
For kidneys, in the US, it's purely wait time, except for children, patients with high antibody levels, and prior living donors. There is a point assigned to patients to give an advantage to these groups. That's how it was 2 years ago, and I think it still applies.

[MooseMom]

I would certainly place the need of children, high PRA people and previous living donors above my own!  And I understand the moves being made by UNOS to change their allocation policy to more closely match recipients with donor kidneys.  I'm all for making the system as fair as possible.

[ToddB0130]

I am pre-D and expecting to clear for the list in mid December if all goes well.

I'm a little confused about the way the list works though ....... when I had asked my nephro about being placed on the list while I was finishing some of my clearances (which thinking back on it was irrelevant at the time since my GFR was 24 ... DOY !!!),  he mentioned that it couldn't work that way and he had a patient who received the call within WEEKS of being placed on the list.  (it was apparently just the most perfect match ...lucky devil !!).

Sooooooooooo ............I'm not sure it's *really* first come, first served based on wait time ............but I definitely know it's correct what you stated about lung, etc transplants ............my brother made it to 5th on the list for a double lung transplant (at 49 years of age),  but his health started declining in other ways and they began talking to him about possibly not being able to stay on the list.   Sadly,  it became a moot point because he passed away before they ever actually took him off the list.

[okarol]

You can get a call within weeks if you're one of the lucky few who gets the perfect match call - that bumps you up but it is rare (not impossible) so you'll hear about it from time to time.

[cariad]

Oh, and never use the term "cadaveric" around anyone from the NKF if you do not want to get chastised! I was told years ago that it's insensitive. I thought it was a medical term. Silly me.

What term are we supposed to use?

[Henry P Snicklesnorter]

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