Extended protocol transplants

[Zach]

All centers are required to get your consent... it's the law I believe, or at least UNOS rules... dunno which.

A signed consent form is one thing, a fully informed patient is another.
First, lets get the correct term, so we can look up the information:  Extended Criteria Donor or ECD

This is from the UCLA website on ECD.
http://www2.healthcare.ucla.edu/transplant/brochures/Kidney/donor/ECD.pdf

They talk about the one year success rate of 80%.  Sounds pretty good.
But what they don't say is the success rate at the five year mark is around 52%.  Is this fully informing the patients?

Here is a website that has actual numbers, not estimates:

http://www.ustransplant.org/annual_Reports/current/509b_agecat_ki.htm

You can see for yourself, on the ages they transplant ECD kidneys and success rates, and draw your own conclusions.

I have no problem with 70-year-olds receiving ECD kidneys.  Maybe the answer should be that you receive a deceased donor kidney from your general age group.  Just more sorting by the master computers ... and for some people, longer waits.

[angela515]

I was fully informed... and I wouldnt do it unless like I said I was very old.

[jbeany]

They talked to me about ECD organs when I was at my transplant eval this week.  They said that I would have to sign a consent form to get put on the list of people considering ECD organ transplant.  The doctor didn't recommend it for me.  He said he would only recommend it for a younger patient if they were not doing well on dialysis.  In that case, a transplant that lasted only a short while would be a better option than more waiting time with inadequate dialysis, since the odds of becoming to sick to stay on the list were very high for that kind of patient.

[NickL]

To answer some questions,
  No one can tell exactly why my kidneys failed - the thought seemed to be that they never really came back. I heard from one nurse  that they were on ice a long time - although no one ever verified this to me. There was a brief window of about 2 weeks where I felt unbelievably good and wondered if this is how normal people feel all the time, and then it started to go downhill. Also after a cadaveric transplant there is a time where the kidneys do not work which can last up to six months - this is not rejection but a time period where the kidneys are repairing themselves from the inflammation caused by being out of blood flow and on ice. Mine lasted 5 weeks before i started to produce urine. Although i was making water the kidneys never really started to clear wastes very well - although they did for like i said about 2 weeks and then i had a rejection episode which happens more frequently then you realize and the docs are not that concerned with because they have meds to fix it. After that it was a slow motion decline which took 4-5 months before they threw in the towel. All that time you are walking around with a BUN of 100-150 and creatine of 3-4-5-6-7-8 until you can't wait to get back on the machine.

 Some say they would not take it but the facts are that when they work they can last up to 12 years - at least thats what they say. I felt if they lasted 2 years it would have been worth it because it would be time off the machine and my body would heal - as long as you felt good and I did for a short while even though my creatine was never lower than 2.3 and that was only one day - most of the time it was 2.8  - 3.8 and honestly that would have been ok if it stayed there - but it did not.
  At the time I felt the risk was worth it and given the same set of circumstances I would do the same - but the circumstances are different now. I have had time to think about this , which is the point of my post. 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. I did not remember signing that consent - it was so long ago. I did not find out it was from an ECD until I was signing the preop consent for surgery form and asked what does a dual cadaver renal transplant mean - then they told me. This is after getting the call on Wednesday night and waiting until Friday @ 3am to get the next call when they tell you you won the lottery and the kidney is yours. If I had known that they were kidneys from a 63 year old man I might have thought differently given the time i spent waiting for the second call - then again maybe not. that decision is one you have to make at that time. I just think a little more time to assess the risk might have been helpful.

 I think if it is not common practice now it will be soon as people wait on lists that are 8-10 years long and that is only if you sign onto that "list" in the first place - otherwise you never get called - which is probably a subject for another post. Also you have to sign the consent form in order to called for such a kidney. So yes you are informed at the time you sign, but as in my case it was years later that i got called. I wasn't as i said before thinking of questions - i was thinking i was the luckiest guy in the world. and yes you can say no right up to the last second but when you are in that situation - I'm talking the eleventh hour and they are ready to go - it's not the easiest thing to do. So..... talk to your coordinator and get all the facts so you can make an informed decision at that time.

[Rerun]

Did they put one on each side of your pelvis?

[NickL]

Yes , so the cut is vertical . Also one thing about dual transplant is the surgery is twice that of a normal transplant - so recovery is harder - but since i did not have a  prior txp - ignorance was bliss.

[Zach]

And did they remove the transplanted kidneys after they failed?

[mrhecht]

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. translants 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.

[Zach]

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. translants into travel time to get to my hospital)
3 - cause of death
4 - medical history
5 - age

That's a real good list to have!

How about CMV positive or negative?  Unless you're very specific, they may not volunteer the information, even if you ask for medical history.

[mrhecht]

How about CMV positive or negative?  Unless you're very specific, they may not volunteer the information, even if you ask for medical history.

You are quite right, and I left that off. I am (Aaaargh!) still CMV negative (as I was in 1992) and already told them unless its a perfect match, I wouldn't consider a CMV positive. Being O+, that will certainly extend my wait, so never say never, right?

I was astonished to learn that my brother-in-law, who just got on the list, wasn't informed of his CMV status (he is positive). I sometimes wonder at some centers, if there's a "Don't ask, don't tell" policy. As in, if YOU don't ASK, THEY won't TELL!

[kitkatz]

What is CMV?

[NickL]

And did they remove the transplanted kidneys after they failed?

Yes, but only because they are preparing me for another transplant - and the fact that there were  2 rejected organs in my body - but normally they told me they would not remove a rejected kidney if it wasn't causing a problem. However as i found out this usually means you are on prednisone for years until the body eventually turns that rejected organ into scar tissue. For example - when they removed the kidneys they leave a small portion of the ureter(the tube which goes from the kidney to the bladder) attached  - maybe 1 inch of tissue. I had two of these things left in me which caused unbelievable pain and discomfort. It wasn't until two months later that i was hospitalized and after 10 days of tests did they realize i was suffering from ureteritis - inflammation of these little pieces of tissue. My dose of prednisone was  increased which brought relief and slowly tapered over the nest 8-10 weeks. It was then I  wondered what happens to people where they leave the kidneys in and i guess a lifetime of prednisone might be the answer if the rejected kidney wasn't causing more serious complication. If it were to happen again I would insist upon removal.

That is a great list to have - I'm writing it down along with Zach's questions also.

[Jill D.]

What is CMV?

CMV is a common virus that they screen both donor and recipient for...they also screen for EBV. I'm not sure what CMV is short for, but EBV is Epstein-Barr virus, which can cause mono in some cases. Ideally the donor and recipient are both either positive or negative for these viruses. I had a live donor transplant cancelled because I was exposed to EBV the week before my surgery. At that time, I was surprised to learn that even though I was negative, my donor was positive and this would not prevent me from getting the transplant - it was something "of note" that they would have to keep a close eye on post Tx. The good news is, two weeks later I learned that I had developed the virus and was building antibodies to it (I never got sick) and converted to positive. In my opinion, God's hand was involved in this turn of events!
I was told that Mayo is in the early stages of research on developing a vaccine for EBV - not sure about CMV.

[angieskidney]

What is CMV?

CMV is a common virus that they screen both donor and recipient for...they also screen for EBV. I'm not sure what CMV is short for,

cytomegalovirus

http://www.findarticles.com/p/articles/mi_qa4117/is_200506/ai_n14688223

Cytomegalovirus is the most common infectious complication in solid-organ transplant recipients. Despite the frequency of the problem, no commonly accepted approach to Cytomegalovirus prophylaxis and treatment exists. Because cytomegalovirus may lead to the modulation of the immune system sometimes causing opportunistic superinfections, allograft injury, acute rejection, chronic rejection, and development of posttransplant lymphoproliferative disease, transplant coordinators require knowledge of the disease, diagnostic methods, and treatment and prophylaxis strategies. This case study reviews a high-risk cytomegalovirus transplant recipient after living-related kidney transplantation. In addition to a review of the pathophysiology of the disease process, patient, family, and nursing staff education, and cultural and psychosocial aspects of cytomegalovirus, prophylaxis, diagnosis, treatment strategies as well as role of the transplant coordinator, will be discussed. (Progress in Transplantation. 2005;15:157-160)

Cytomegalovirus (CMV) is a latent herpes virus that infects approximately 15% of adolescents and 50% of adults in the United States. The virus is transmitted through close physical contact, sexual intercourse, and blood transfusions.1 CMV rarely causes disease in the immunocompetent, but frequently reactivates in a compromised host, such as a solid-organ transplant recipient. When CMV primarily infects a previously uninfected recipient or a latent virus reactivates in the recipient, replication can occur in nearly any organ. In addition to the direct impact of the virus, CMV also leads to the modulation of the immune system, which can lead to opportunistic superinfections, allograft injury, acute rejection, chronic rejection, and development of posttransplant lymphoproliferative disease.

CMV is the most common infectious complication in solid-organ transplant recipients. Despite the frequency of the problem, no commonly accepted approach to CMV prophylaxis and treatment exists.3 Patients who are CMV negative at the time of transplantation and receive a CMV-positive organ are considered to possess the highest risk of developing CMV disease (Table 1).5 The following case review will outline a young woman's clinical course of CMV after kidney transplantation. The role of the transplant coordinator, cultural aspects of the patient care, and the psychosocial issues surrounding CMV after transplantation will be discussed.

• Cytomegalovirus (CMV) [si-to-MEG-uh-lo-vi-rus] is a virus that infects most people worldwide.
• CMV spreads from person to person by direct contact.
• Although CMV infection is usually harmless, it can cause severe disease in persons with weakened immune systems.
• There is no treatment for CMV infection.
• Prevention centers on good personal hygiene, especially frequent handwashing.

http://www.dhpe.org/infect/cytomegalo.html

[angela515]

I still have my moms kidney in me... and i didnt have to take prednisone the rest of my life. Actually im not on prednisone this translant, which is great.

I take Valcyte, b/c me and my donor were positive for CMV.

[kitkatz]

Well shit! Another damned thing to worry about!
Sorry about the curse words, but geez!

[kelliOR]

What is CMV?

Just wanted to add,  if both recipient and donor are negative for anti-CMV Igm antibodies, the incidence of CMV is <5%.  If recipient is CMV+, the incidence of infection (independent of the donor status) is about 25%-40%.  Clinical infection occurs 3-4 mos. post txp. during maximal immunosuppression.

It should be noted that many deceased donors receive many blood transfusions, and it should be presumed that 1 or more units carry the virus.  In most cases, recipients receive valcyte at least the first 3 months after surgery.  Its an expensive drug, and when I had my txp. was told that it was not covered by medicare. That was one of the things discussed pre-transplant (to make sure I could afford it).

Also, Angie is right, there is no cure, but there have been some successes of preventing CMV disease vs CMV infection post transplant with the use of gancyclovir and valacyclovir.  There is a difference between CMV infection (where detection of the CMV antibody is present) and CMV disease (which presents clinically as fever, hi white count, hepatitis, pneumonia, things that can lead to organ rejection).

[angela515]

What is CMV?

Just wanted to add,  if both recipient and donor are negative for anti-CMV Igm antibodies, the incidence of CMV is <5%.  If recipient is CMV+, the incidence of infection (independent of the donor status) is about 25%-40%.  Clinical infection occurs 3-4 mos. post txp. during maximal immunosuppression.

It should be noted that many deceased donors receive many blood transfusions, and it should be presumed that 1 or more units carry the virus.  In most cases, recipients receive valcyte at least the first 3 months after surgery.  Its an expensive drug, and when I had my txp. was told that it was not covered by medicare. That was one of the things discussed pre-transplant (to make sure I could afford it).

Also, Angie is right, there is no cure, but there have been some successes of preventing CMV disease vs CMV infection post transplant with the use of gancyclovir and valacyclovir.  There is a difference between CMV infection (where detection of the CMV antibody is present) and CMV disease (which presents clinically as fever, hi white count, hepatitis, pneumonia, things that can lead to organ rejection).

I just wanted to let everyone know.. NOW, Valcyte *IS* covered under Medicare. 

[angieskidney]

I still have my moms kidney in me... and i didnt have to take prednisone the rest of my life. Actually im not on prednisone this translant, which is great.

Have you checked out this thread yet? http://ihatedialysis.com/forum/index.php?topic=2655.new#new

Well shit! Another damned thing to worry about!
Sorry about the curse words, but geez!

Ya first time I heard about it was when a guy I grew up with (one of the "Kidney Kids") got it.

[okarol]

Scripps hospital told us that nearly all of the adult population has been exposed to CMV, and that it can
lie dormant, undetected, until immunosuppressants are on board. So they routinely treat every transplant
patient with Valcyte.

[angieskidney]

What are the negative side effects of CMV? Or should that be a new thread??

[BigSky]

From what I was told the majority of people are CMV postive.

When I had my transplant I was CMV negative.  After the transplant they informed me I was exposed due to the kidney.  They kept the whole thing pretty hush hush and never did say much else about it.

Anyway for the next several months I would have to go to the doctors office for an IV drip that would last about an hour.  They never did tell me what it was except that it would prevent CMV from developing.

[Jill D.]

Scripps hospital told us that nearly all of the adult population has been exposed to CMV, and that it can
lie dormant, undetected, until immunosuppressants are on board. So they routinely treat every transplant
patient with Valcyte.

That's interesting info for me...me and my sister were both negative for CMV and to my knowledge they did not give me anything post Tx to build antibodies to the virus. I will have to be sure and get more info on this at my 4-month follow up.

[Sara]

Bumping this up.  Joe is 37, been on the list for 1 year, and he was sent a letter to opt in or out for the extended criteria list.  Not sure what to think of all this. 

[Wattle]